The life & times of Stem Cell Girl

Local child gets sight back after stem cell treatment

2008-05-17T16:33:00.000-07:00

Wednesday, 14 May 2008
By DAN J. BEILSTEIN dbeilstein@nsb-observer.com This email address is being protected from spam bots, you need Javascript enabled to view it
SOUTH DAYTONA — Six months ago, former Port Orange resident Abby Wolfe said she would do anything for her 18-month-old son, Elioe “Tre” Burgos III. Elioe’s vision was thought to be no better than 20/1200. He was blind, and diagnosed with Optic Nerve Hypoplasia (ONH). Doctors informed Ms. Wolfe and Elioe Burgos Sr. that young Elioe suffered from an underdevelopment of his optic nerve. According to doctors, ONH is not progressive or inherited. Ms. Wolfe’s decision to embark on a medical journey involved researching umbilical cord stem cell treatments to grow cells needed to help improve Elioe’s sight. But, that meant raising money to pay for the operations and travel to China — where stem cell research is legal. The frustrated parents soon learned there were no medical facilities in the United States that offered the treatment Elioe needed. Next stop, China. “As a mother, I think you want to do whatever you can to prepare your child for adulthood,” she said. Ms. Wolfe and Mr. Burgos would travel with family support to China’s Hangzhou Hospital, in Hanzhou China. An entire floor is dedicated to stem cell treatments using umbilical cord cells — for cases just like little Elioe. In preparation, Elioe went through an exhaustive 10 medical appointments to prepare for the treatment. “We just wanted to get it behind us,” she explained. “It was a little scary getting off the plane. There were lots of nerves, but also excitement.” Ms. Wolfe said the first treatment was difficult. Doctors began a series of cell injections consisting of 10 to 15 million healthy stem cells per injection. Elioe and his family stayed in China from Feb. 20 until March 17. Ms. Wolfe said the treatments are new and the trial has only been active for about 11 months in China. “I think the first treatment was difficult because there weren’t a lot of results right away,” she said. Though Mr. Burgos attention was fixated on his son, he said he was amazed at the seven American families at the clinic for similar reasons. “We were all there for almost the same reasons,” he said. “The staff was professional. If you needed something, they got it — for everyone there.” Mr. Burgos told a story of a former rugby player who had suffered from muscle atrophy. He was almost bedridden when Ms Wolfe and Mr. Burgos arrived with Elioe. “I saw this guy go from bed-ridden to walking,” Mr. Burgos marveled. “Everyone on that floor made improvements. It was wonderful to share in other families successes.” “When we saw these American families — two of which were doctors — undergoing this type of treatment, it gave us confidence,” he said. Soon, results began to appear, Mr. Burgos explained. “Before we went, I just felt in my heart these treatments were going to do something,” he said softly. “We got more confident as the treatments began to show improvement.” When Elioe returned to the United States, his drastic improvement dumbfounded his doctors. “One said, ‘this isn’t the same kid,’” Ms. Wolfe recalled. “They didn’t know what to say.” What they marveled at was Elioe going from 20/1200 to 20/200 in less than three months, Ms. Wolfe said. “It was really amazing. He can watch the television now. He can see toys when his father hides them from him. He’ll look for them.” “He was a typical blind child before this,” Mr. Burgos said. “He was very limited. We we’re joking once, and thought now things are worse because he can see. He’s reaching for everything now and we have to hide things.” For both parents, Elioe’s condition and his improvement has taught them life lessons, they said. “I think it really impressed upon me that anything is possible,” Mr. Burgos said. “This whole thing was an adventure — emotionally, and physically exhausting, but worth it.” According to Ms. Wolfe Elioe still has almost seven months more time for improvement. According to doctors, patients continue to see improvement up to nine months after treatment. Elioe is only on his third month. “Every week, he does something new,” Mr. Burgos said. For Ms. Wolfe, she learned sometimes you have to try new things in order to find success. “It has amazed me,” she said. “By not excepting the conventional wisdom that there was no cure, that nothing could be done for him, we were able to improve the quality of his life in just weeks, and that will be maintained for the rest of his life.”
Last Updated ( Wednesday, 14 May 2008 )
http://www.nsb-observer.com/content/view/94509/60/

Daegan's fight for sight

2008-05-16T16:41:00.000-07:00

May 16, 2008

By Wes Wallace
EAST PRAIRIE, Mo. - It's an experimental treatment from thousands of miles away, and it could be the only hope for a four year old from the Heartland. Daegan Archie was born blind due to a rare disorder, and there's no treatment here in the United States.
"There's no way this can be fixed, he's blind, and he's going to be blind for the rest of his life, " said Paige Archie, Daegan's mother, as she recalled a series of visits to the doctor.
Discouraging news from medical experts, giving no hope, no cure, and no where to turn, for little four-year-old Daegan.
"I didn't give up hope, but you thought in the back of your mind, when is this gonna happen, if ever," Paige questioned.
Her only alternative, new stem cell research that could help correct Daegan's blindness.
Blind from Birth
At three months old, Jason and Paige Archie noticed a problem with Daegan's vision.
"A couple of family members would say something's wrong, he's not tracking light, and wouldn't look at people when they walked by," said Paige.
A visit with the family doctor and even trips to eye specialists in Cape Girardeau couldn't diagnose what was wrong.
"At one point, they never said anything. So I asked 'can he not see', and they said 'he can't see'...I said nothing? They said 'nothing'."
The eye experts determined Daegan was born with a condition called Septo-optic Dysplasia, which means his septum and optic nerves didn't fully develop. It's a rare condition with no treatment in the U.S., forcing the Archie's not take no for an answer
"When somebody tells you something that's not going to happen or good luck, there's a one in a million chance, you don't tell me that, because I'm going to find a way, anything in my power to change," Paige said. "So that's what we're doing."
Fight for Sight
Then Paige did what any mother would do. She researched and read an article about a treatment done only in China using umbilical stem cells to help re-grow the nerves in Daegan's optic nerves. However, Daegan's family faced major medical bills of more than $40,000, plus an expensive trip to China.
"I have to work full time and my husband works full time, we have two kids, so we thought, 'How are we going to find time to do fundraiser's?," said Paige. "But you find time."
Of course the procedure is very experimental, but what's so remarkable, many people in East Prairie, Bertrand, and all across the Heartland opened their hearts and wallets to help with a controversial procedure. After hearing Daegan's story, you can understand why so many want to help his fight for sight.
A Community Cares
"Everyone wants to help...they all want to be part of this miracle that we think will take place, " said Loretta Peters, a relative and major fundraiser for Daegan's Fight for Sight.
We caught up with Peters as she was organizing a fish fry and auction. She tells us she's overwhelmed by the outpouring of support for little Daegan.
"When you look into those big beautiful eyes and you realize they can't see, they've never seen light or his mother's face, how can you not want to help?" asked Peters.
Paige and Jason Archie are fully aware of the community contribution to their cause and are fully grateful.
"I just want my baby to see me, see his family, and see all these people who've been helping him," Paige added. "I want him to be able to look at those people and say 'thank you'."
Stem Cell Controversy
We need to point out, the stem cells used come from umbilical cords, and not from embryos. Even so, there's still a lot of debate about the effectiveness of the procedure.
However, Rylea Bartlett, a six year old from Webb City, Missouri had a very similar problem just like Daegan. She had the procedure done in China recently, and she's now able to see with glasses. Her vision is not perfect, but when she realized she saw her mother's face for the first time, she said, "Mommy, you're beautiful." Later, she looked in the mirror and didn't understand she saw her reflection, so she asked her mother, "Who is that pretty girl?" So far she's one of 13 children who gained vision after the operation. We talked to Rylea's eye doctor, and he calls it a miracle. Dr. Larry Brothers explains he understands there's controversy, but he saw Rylea when she was blind and the fact she can see now is amazing.
Paige, her mother, and Daegan will fly to China later this month for the therapy at the same hospital where Rylea had her treatment. We'll keep you updated on what happens next. You can keep track of the progress from China on Daegan's web site.
WorldNow and KFVS12
Source: kfvs12.com http://www.checkbiotech.org/orphan_News_people.aspx?infoId=3366

Good News: Stem Cells Restore Child’s Sight

2008-05-15T16:40:00.000-07:00

Two-year-old Elio Burgos, who was born blind, is now able to see, thanks to a series of adult stem-cell treatments.
Elio was diagnosed with optic nerve hypoplasia, an underdeveloped optic nerve. His mother found a hospital in China that offered umbilical cord stem-cell treatments that could improve her son’s sight. The Florida family flew to China so Elio could undergo the treatments.
Now, fewer than three months after his treatments — a series of cell injections consisting of 10 to 15 million healthy umbilical cord stem cells — Elio's eyesight has gone from 20/1200 to 20/200 and will hopefully continue to improve during the next seven months.
"While there have been unethical and dangerous experiments done in China with destructive embryonic stem-cell research,” said Dawn Vargo, bioethics analyst for Focus on the Family Action, “it's nice to see that ethical treatments that can cure patients are finally getting some attention."
http://www.citizenlink.org/content/A000007430.cfm

'Change for China' project: Local students help out in effort to bring light and color to girl's life

2008-05-15T16:36:00.000-07:00

Thursday, May 15, 2008By ERIC CRUMP/Editor
In the background Eastwood third-grade teacher Crystal McGraw smiles as her students, Madison Rule and Brant Sims, talk with Savannah Watring, an 8-year-old from Syracuse whose family is raising $50,000 to take her to China for an experimental treatment that they hope will improve her sight. Savannah was born blind. McGraw's class collected change to contribute to Savannah's trip fund.(Eric Crump/Democra-News) [Click to enlarge]

What is the price of sight?
Savannah Watring's family thinks $50,000 is not too much to pay if it helps restore the sight of the 8-year-old who has been blind from birth. And it takes a lot of work and a lot of help to raise that kind of money.
Third graders in Crystal McGraw's class at Eastwood Elementary School in Marshall have done their bit for the cause.
McGraw is a second cousin to Watring, and when she told her students about Savannah's hope, her students wanted to help.
Savannah has optic nerve hypoplasia (ONH), a condition that has no sanctioned cure in the U.S. But in China an experimental stem cell procedure is giving families reason to hope that the gift of sight might be possible for their blind children.
"The kids and I were working on a project in December about Christmas around the World," McGraw said. "I told them about the Africa project my class did last year. I mentioned Savannah and where she was going and it went from there ..."
McGraw said she wasn't sure at first that the class could do much, but her students would not sit idly by.
"I told them that since we had just collected canned goods I did not know what we could do for her (monetarily)," McGraw said. "They were adamant about doing something! So I told them they could bring pocket change in and we could give it to her."
McGraw said she remembered when she first met the incoming students for this year's class, Grant Maupin asked me if we could do "a cool project like your class did for Africa kids."
"I was blown away that he was interested in that. I told him, that if a project fell in our lap like that one did then we would definitely do it," she said.
"I guess his wish came true as he was one of the head students behind the Savannah project going door to door in his neighborhood collecting change," she added.
The class raised more than $400.
To show her appreciation, Savannah visited McGraw's class Friday, April 18, and spent some time talking with the students who contributed to her trip fund.
She told them about her horse, Benny, about the music she loves and about her favorite literary character, Junie B. Jones.
McGraw said the visit was a big success on both sides.
"She has been talking about visiting Eastwood since she left. She keeps wanting to come back."
And her students learned math lessons from tallying their collections, plus a great deal about "how to treat others with respect no matter what, and we practiced what it would be like to be blind."
"The life lessons are endless" she said. "These are the things I will remember most about teaching."
McGraw said Savannah's family was inspired to undertake the China trip when they heard the story of Rylea Bartlett, another Missouri girl with ONH who received the experimental treatment in China.
They hope to make the trip this summer, according to a story in The Sedalia Democrat. The treatments take about a month to complete.
http://www.marshallnews.com/story/1403068.html

Lighthouse donation could help Weston see for first time

2008-05-09T16:28:00.000-07:00

Thursday, 08 May 2008
Three-year-old Weston Wright, and his mother Christina recently received a donation from the San Antonio Lighthouse for the Blind. Photo by Steve Valdez
By Noi Mahoney Editor

No one understands life as a blind person better than the employees at the San Antonio Lighthouse for the Blind. So when the possibility arose of giving 3-year-old Weston Wright his eyesight, employees at the Lighthouse jumped right in.
Last week, employees at the Lighthouse donated $5,384 to Wright. The money will help Wright and his family travel to China for a miracle operation that may help restore his vision.
“It is a good feeling to be able to help,” said Nancy Lipton, spokeswoman for the Lighthouse. “A lot of our employees will never regain their sight. But to be able to give someone the gift of sight, it’s amazing.”
Wright has been blind since birth, suffering from a condition known as Septo Optic Dysplasia. It is a rare condition causing abnormalities of the brain and a poor functioning pituitary gland.
“It is very rare, but we are seeing more and more cases,” said Christina Wright, Weston’s mother. “Weston was about 4 months old when he was diagnosed with it. The doctor said your child is blind and will never see. It was an absolute shock.”
The debilitating condition has left Weston Wright with a multitude of other problems. He is undersized for a 3-year-old because his body doesn’t produce enough growth hormones.
The boy must also endure blood work and multiple medications every three months.
Christina Wright, and her husband Marcus were told by one doctor that there was no procedure or treatment that could help Weston. Several months ago however, Christina heard about a $28,000 procedure involving umbilical cord stem cell therapy that might help Weston.
The procedure, which involves stem cell injections, has been used in the U.S., but not for Septo Optic Dysplasia. Weston Wright would have to travel to the Chinese city of Qingdao to receive it.
“I found about it on one of those ‘Nation in the News’ TV shows,” Christina Wright said.
It involves a series of injections of stem cells into Weston’s spinal cord. It is hoped the stem cells will stimulate Weston’s optic nerves and pituitary gland.
To get to China, the family needed to raise $40,000 for the treatment that could give Weston his sight and the hope of a better life.
The Wrights, who also have an 8-year-old son named Nicholas, said when they first heard of the operation and its costs, they “prayed.”
“The lord brought us to this situation,” Christina Wright said. “Then we started planning.”
Friends held a fundraiser for Weston Wright in February. Then, a TV station picked up Weston’s story on March 30. That’s when employees at the Lighthouse heard about Weston’s plight.
“We decided we would hold an internal fundraiser,” Lipton said. “We told our employees, whatever you raise, the company will match.”
The Lighthouse was eventually able to donate $5,384 for Weston’s cause. The funds helped the Wright family meet its total of $40,000 for the trip.
The Lighthouse employs about 500 people, about 150 of whom are vision-impaired. It is located on the South Side at 2305 Roosevelt Ave.
The Lighthouse makes fleece lining on parkas for the Navy, chin straps for helmets for the Army, as well as blankets for Boeing Co. and pens for the military.
“A lot of our employees live on the South Side,” Lipton said. “These are tough economic times. Some of our employees don’t have a lot of money to spare, but they did what they could.”
Weston Wright and his family leave for China on July 1. They will return by July 30.
“I just want to say thanks to everyone for praying for us and supporting us,” Christina Wright said. “Everyone’s help allowed us to change Weston’s life.”
http://www.clickitsa.com/content/view/20012/393/

See Elvis To Help Will See

2008-05-07T16:13:00.000-07:00

Issue #19.41 :: 05/07/2008 - 05/13/2008
See Elvis and help Will see

BY AMY FENNELL CHRISTIAN

‘One Night With You: A Tribute to Elvis Presley’Augusta Prep’s Hull Fine Arts CenterSaturday, May 107 p.m.$12 in advance706-394-3916helpwillsee.orgWill Ford’s family and friends have been doing everything they can think of to help the 21-month-old’s parents raise money for a trip to China — a trip that just may give him sight. They’ve held Kick-A-Thons at the K-Mart at Washington Road; sold dinners at everywhere from West Acres Baptist Church to Augusta Newsprint; and even washed cars at Hooters.Now, they’ve gotten Elvis in on the act.This Saturday, catch award-winning Elvis Tribute Artist Jeff Barnes as he presents “One Night With You” at Augusta Prep, and the $12 you pay for tickets will go to the Help Will See fund. Will was diagnosed with Optic Nerve Hypoplasia shortly after he was born in 2006 and he is legally blind. He and his parents are now in China, and he is undergoing a series of umbilical cord stem cell injections that aren’t yet offered in the United States. They return later this month and, until then, are blogging about their trip on their Web site.

Eyeing a remedy

2008-05-07T16:08:00.000-07:00

By Carol Vaughn • Staff writer • May 7, 2008

WATTSVILLE -- Thousands of people will travel to China this summer to attend the Olympic Games.
Brad Tullous, 13, of Wattsville also is planning a trip there -- to Qingdao, a city on the northeast coast that is the site of Olympic sailing events. But Tullous' purpose is not to see the Olympics, but merely to see.
Tullous, a seventh grader at Holly Grove Christian School in Westover, Md., was born with a rare disorder called optic nerve hypoplasia that left him partially blind.
He and his father, Todd, will fly to Qingdao in June so Brad can undergo a month-long experimental treatment they hope will improve his sight.
Brad has no vision in his left eye and very limited vision in his right eye due to a birth defect that prevents the optic nerve from developing properly.
After two weeks, his mother, Amy, will travel to Qingdao to take Todd's place so he can come home to care for the couple's two younger children, Caleb, 8, and Olivia, 4, and return to his work as manager of Monumental Insurance Co. in Pocomoke City, Md.
"I'm just going to have so much to tell when I get back to school," said Brad last week, adding that school and church friends have been "really supportive."
The treatment and travel together will cost the family $45,000 and means they will be apart most of the summer, but Amy Tullous said it is worth it.
"We are willing to do anything to give Bradley the chance at an easier life, even if it means traveling across the world and raising money," she wrote in an e-mail.
Holly Grove school and other local groups are rallying to help the Tullous family raise funds for the trip and treatment, which is not covered by medical insurance.
Casual Fridays this month at the school will allow students to forgo uniforms for a $5 donation.
And on May 27, a concert and silent auction at the Chincoteague Center will feature the Holly Grove honors choir along with other musical groups and an auction of original works donated by local artists.
Finding a cure
Amy Tullous first found out about the treatment on the Internet last January and contacted the company that developed it. She also read testimonials from other families whose children have been helped by the procedure.
During the treatment, stem cells taken from banked umbilical cord blood will be injected into Brad's spinal fluid in a series of procedures over a month-long period.
The cells, considered the body's basic building blocks, are able to transform into many other cell types, including optic nerve cells.
The technology was developed by Beike Biotech, a Chinese company formed in 2005 that has over 60 scientists, some from the United States, working on stem cell research.
Of over 2,000 patients who have been treated for various ailments, 70 to 80 percent report they are satisfied with improvements, according to the company Web site.
A dozen children with ONH already have been treated at the China facility. All have shown some improvement, Amy Tullous said.
Doctors told her it will take up to a year after treatment to determine how much vision Brad will gain as the optic nerve develops.
The stem cell injections are not available in the United States and are not covered by medical insurance because they have not been federally approved for treating the disorder -- although the FDA has approved the use of cord blood stem cells that come from live births for over 80 other conditions.
In China the procedure has been used to treat diseases ranging from Alzheimers to autism and spinal cord injury, in addition to ONH.
When Brad was two months old, doctors at Children's Hospital of the King's Daughters in Norfolk told his parents he would likely be totally blind and would have to use Braille to read and a cane to walk. Nothing could be done to cure him, they were told.
They credit the prayers of the Chincoteague Church of God, where they are members, and other area churches with improvements in Brad's vision that began four months later.
"I heard from every church on the island that they were praying for him," Amy Tullous said. "It seemed like he just started reaching for toys after that."
But Brad's vision is still very limited. In his current condition, he could not drive a car, for example.
His parents see the new medical technology as one more example of God's blessing.
"We've never stopped praying that God would do a miracle," Amy said, adding, "When I found this Web site, I just prayed, 'God, if this is what you want us to do, just smooth the way.'"
Brad was accepted for treatment in the Chinese program after finding a doctor at John Hopkins Medical Center's Wilmer Eye Institute in Baltimore, Md. who agreed to do the necessary medical testing prior to reatment and to track his condition for one year afterwards.
"We believe that it's God who did this," Brad said. "It's not a trial; it's an adventure."
He returns to the United States Aug. 5 -- three days before the Olympics begin.
The Tullous family has a Web site where donations can be made at http://www.bradleysblessing.com/.
http://www.delmarvanow.com/apps/pbcs.dll/article?AID=2008805070345

Money Floods in for Little Megan

2008-05-01T15:42:00.000-07:00

MONEY FLOODS IN FOR LITTLE MEGAN
Andersonstown News Monday
by Gemma Burns

The parents of a blind little girl desperate to raise funds for pioneering surgery that could partially restore her sight say they have been "overwhelmed" by the spirit of generosity in West Belfast.

St James' mum Leanne Traynor said the young family are stunned that the level of support readers of the Andersonstown News have shown them has meant they have raised £10,000 in the space of just eight days.

Little Megan Traynor was born with septo-optic dysplasia, an extremely rare brain condition which means she is blind, suffering from epilepsy and diabetes, as well as having learning difficulties and a growth hormone deficiency. Her only hope of being able to see is high-tech stem cell therapy being pioneered in China using cells from an umbilical cord.

The family needed to raise over £30,000 to fund the operation and since the story first appeared in the Andersonstown News they have been inundated with donations and outpourings of support from the community.

Mum Leanne, who is pregnant with her second child, said most of the cash and offers of help to them has come from readers of this newspaper.

"Our story appeared in the Andersonstown News two weeks ago and eight days ago we got Megan's charity account up and running and there is £10,000 in it already, we just can't believe it," she said.

"The amount of people phoning and offering help has just been amazing, we can't thank them enough. It seems that most of the people who are donating are from the local area and read it in the Andersonstown News, it’s been fantastic. Fold residents went round doors collecting money, I know even a blind woman herself went out to collect.

Doorsteps

"My next door neighbour Cecilia went out round the doors with her friend and got over £1,000 just on doorsteps alone and there have been so many more people who have given generously that we can't thank them all individually but we are overwhelmed by how good they have been.

"The shop Cardland are going to give us 50 per cent of the profits they make in a weekend in July and staff of Bon Marché are going to fundraise for us too. It’s just unbelievable how good people are."

The family are now desperate to raise the other £20,000 that could help five-year-old Megan have a better quality of life. They have arranged a fundraising night in the West club with all proceeds going to Megan's appeal.

"The operation would make all the difference to Megan who has been so brave through everything. If we could get the rest of the money raised we would just be over the moon," said Leanne.

"We are having a night in the West Club on 6 June and the tickets are just £5 with free entertainment, It would be great if we could get all the tickets sold to help the appeal. I can't thank the people of West Belfast enough for all they have done for us."

Tickets for the fundraising night in the West club are available in the club now priced £5. To donate to Megan's appeal at the Halifax building society her account number is 00789720 and sort-code 110976, account name Megan Traynor.
http://www.belfastmedia.com/home_article.php?ID=1215

Family hopeful that Chinese stem cell injections can restore young boy’s vision

2008-04-30T16:02:00.000-07:00

Victoria Advocate
Can you see the light?
BY PAMELA BOND - VICTORIA ADVOCATE
April 30, 2008 - 8:25 p.m.
The first time I met 7-year-old Paden Lane McDonald, he sat right next to me on his couch and peered at me out of the corner of his eyes. After asking my name, he slid to the floor and felt my purse with his hands.
“Do you have anything that lights up in here?” he asked.
As I watched Paden take apart and put back together my cell phone, the only thing I had that lit up, his mother, Shalonn Dehn, said that watching Paden adapt to life with Optic Nerve Hypoplasia, an underdevelopment of the optic nerve during pregnancy, had been hard.
“It’s the leading cause of childhood blindness,” Dehn said. “But usually there are so many other problems involved, the vision issues get pushed to the back. We probably would never have heard of it if he didn’t have it. We are lucky that he has his peripheral vision and light perception.”
There is hope
When Paden was 3 months old, Dehn and his father, Roger McDonald Jr., noticed that he was not tracking things with his eyes. Paden was diagnosed six months later with ONH and told there was no cure. However, in December Dehn heard the story of girl with ONH who had received treatment that restored some of her sight.
At Xiaoshan Hospital in Hang Zhou, China, patients with ONH are receiving treatments of umbilical stem cords through IV and spinal injections that restored some of the underformed cells of the optic nerve and therefore their sight. After months of research and consultations, Paden will receive five treatments, which consist of 10 million to 15 million stem cells, between May 19 and June 17 in China.
The treatment alone costs more than $20,000 and does not include travel and living expenses in China or follow-up appointments. Dehn took out a loan to pay for the medical treatment and Paden’s family has been holding fundraisers since January to pay off the loan that includes selling T-shirts with the slogan “Can You See the Light?”
Dehn said that doctors told them not to expect changes until six to nine months after the treatments, but she said that other patients often see subtle improvements within a week to a month.
“We may come home, a year down the road, and not see a thing, but even if nothing happens, we tried,”Dehn said. “And at least he does have some vision. It’s hard to keep my hopes in check because just watching the videos of how the other kids responded after treatment gives you hope. That makes it more real.”
Dehn said she is nervous about living in China for a month, but said it’s comforting to know that other American families will be at the hospital as well. Paden, however, loudly affirmed that he’s “not scared.”
through Paden's eyes
Looking through Paden’s eyes would be like having a blind spot when looking straight ahead. His vision is 20/400, so he is legally blind, but since he has peripheral vision he can see out of the corner of his eyes, which his mom said gives him an advantage compared to most children with ONH.
“He sees very well for his condition. He’s adapted well,” Dehn said. “It’s hard for me. I tried to see like he does, through the corners of my eyes, and I could only do it for a few minutes. It killed my eyes.”
Paden, who is in kindergarten at Northside Baptist Church, said he doesn’t like school.
His mother said that homework is a constant struggle because his eyes are tired by the end of the day, but he does know all the colors and can read letters and numbers. Using a larger print on yellow instead of white paper and light boxes will help him see worksheets better.
“Teachers were nervous to deal with him at first,” Dehn said. “He tries to be lazy and get others to do stuff for him. There’s lots of pushing, but not too hard because he’ll get turned off. He gets frustrated very easily.”
The other children do not usually pick on Paden because of his condition, but Dehn said that another girl in his class has a walking problem, so most of Paden’s classmates knew how to treat someone with a disability. The school’s Christian environment also helps because they teach a lot of acceptance, she said.
“There were times when kids would say that he’s blind, which is not a word we’ve used with him, and it would hurt his feelings,” Dehn said. “He didn’t know how to handle it but I told him people talk, here’s how we handle it and then we move on. One of the worst nights of my life was when I went to register him for public school, in case he didn’t get in to Northside, and we weren’t there for 10 minutes when these boys came up and started picking on him. It was hard to watch.”
Although things like feeding himself took longer to learn, Paden is very musically inclined and likes to play the keyboard and drums and make up his own songs. He is also interested in all kinds of batteries and is very mechanical, he can take apart and put together almost anything, mostly by touch.
“In public you’d never know anything was different about him because he gets in just as much trouble as any other kid,”Dehn said. “Now we can go on with a new chapter in our lives and hopefully we’ll be extremely happy with the results.”
Pamela Bond is a reporter for the Advocate. Contact her at 361-580-6578 or pbond@vicad.com, or comment on this story at .
Sightfest at Jaycee Hall on Saturday, May 17, to raise money for Paden McDonald’s treatments.
11 a.m. Barbecue
12:30 p.m. Beauty-Less contest
1 p.m. Magician
2 p.m. Auction
3:30 p.m. Bucket raffle
5:15 p.m. Raffle drawing
8 p.m. Band
9:30 p.m. DJ
10:30 p.m. Band
For more information on Paden or his treatment, visit www.padenlane.com or www.stemcellschina.com.
http://www.victoriaadvocate.com/793/story/238202.html

Parents raise money for trips to China to try to give sight to children

2008-04-30T15:24:00.000-07:00

by Lisa Rose, KY3 News
Story Published: Apr 28, 2008 at 10:05 PM CDT
Story Updated: Apr 29, 2008 at 3:45 PM CDT
By Gene Hartley
Video
WEBB CITY, Mo. -- Parents by the hundreds are traveling halfway around the world these days in pursuit of a new cutting edge medical treatment for their children. They're not coming to the United States, though. Many of them from the Ozarks are headed to China, looking for a modern-day miracle.

"Honestly, China's one of the countries I probably know the least about,” said Dawn Barlett of Webb City.
Most of us would never think of China as a world leader in medical care.
"They assured me it was clean,” said Barlett. “I don't want dirty needles.”
But these days, parents here in the Ozarks are booking appointments for their kids on the other side of the world.
"It was just me and my 5-year-old daughter going on the other side of the world,” said Barlett.
"If this is the only place that does it, this is where we're going to go,” said Colin and Kassidy Rose of Nixa.
Parents are going half way around the world for an experimental medical treatment that's not legal in the United States. They're going no matter the cultural differences and no matter the inconveniences.
“In China, they don't serve their patients food. You have to bring in all your own food. They say they have snake over there,” said Colin Rose.
“A lot of things, we weren't used to. We're used to indoor plumbing. The supermarkets were an experience. They have chicken, duck carcasses, live fish and frogs and snakes,” said Barlett.
The Roses and Barlett may have decided the challenges were too daunting to dare if they weren't so determined to help their kids. Rylea Barlett, 6, and Konnor Rose, 4, are both blind. Their optic nerves never fully developed at birth.
"It really hit me hard,” said Colin Rose.
It's a devastating prognosis for parents to hear.
“They said there was nothing they could do for her,” said Barlett.
Barlett never really accepted it. She worked hard to make sure Rylea could excel without sight, all the while scouring the world to give her daughter a future with sight.
Last year, Barlett thinks she found the closest thing to a cure in China, where doctors are using stem cells to try to develop new optic nerves. It's a procedure that's never even been clinically tested in the United States because of the government's severe restrictions on stem cell research.
"Whenever we went over, we expected to get four stem cell transplants,” said Barlett.
Those transplants are simple infusions of newborn umbilical cord cells, pumped through an IV or an epidural-like procedure.
Barlett and Rylea spent a month in China, trying not to get their hopes up too high since Rylea had never even been sensitive to light.
"A week after her first transplant, she responded to a pin light by turning away each time,” she said.
It was a first and, in the nine months since those stem cell transplants, Barlett says Rylea's progress has been miraculous.
It's just the kind of miracle for which the Roses have been praying for their son. So, like other hopeful parents around the world, the Roses are hard at work saving and raising money to go to China.
"The down payment is huge,” said Kassidy Rose.
The package price for the month-long series of stem cell infusions is $30,0000. Add to that airfare, food and lodging.
"I don't know what we're expecting; any improvement would be worth it,” said Colin Rose.
For Rylea, mom says the improvement has been so significant that she's planning another trip to China this summer. It's a labor of love for her to see just how much Rylea can really see.
"For now, where we are, it's an absolute blessing. It's one of those things where we hope for the absolute best but take whatever you're given,” said Barlett.
Much of China's stem cell research and experimental treatments have gone undocumented in Western medical journals. So some doctors in the United States reserve judgment on what these parents are experiencing. Other physicians are blatantly skeptical.
China, by the way, is experimenting with stem cell infusions on patients with many other conditions, including autism, muscular dystrophy and Lou Gehrig's Disease.
There an age limit for this treatment. You can give sight but not vision after a certain age.
At least four families in the Ozarks are raising money to pay for their children to go to China.
http://www.ky3.com/news/local/18345884.html

Yaussi makes kicks last

2008-04-26T15:22:00.000-07:00

Colin LindenmayerApril 26, 2008Even though she can't see the field, Macie Morse attends every Colorado Ice home game.Macie, a 15-year-old ninth grader at Wellington Junior High School, has optic nerve hypoplasia. Ice kicker Deric Yaussi has developed a fundraiser to pay for a procedure to hopefully cure the blindness-causing syndrome.The fundraiser, dubbed "Kickin' It For Macie," has its own announcement during halftime of United Indoor Football League games at the Budweiser Events Center in Loveland. People are encouraged to donate any amount of money per point Yaussi scores this season. In addition, buckets are passed through the arena during the game to collect donations from the crowd."I've heard about other fundraisers throughout the league and I thought it was my turn," Yaussi said.At the Ice's home opener on April 10, fans donated over $1,000. Money collected from the Ice's April 18 game combined with other donation sources for Macie total about $11,000."We're getting donations from people all over that we don't even know and never heard of just because they know that Deric is doing this," Macie's mom, Rochelle Morse, said.Yaussi said he hopes to raise all the money for the procedure -- which costs about $30,000 and isn't offered in the U.S. -- but if the funds fall short, he's glad he gave the family a head start."The goal right now is just to raise as much as possible," Yaussi said. "(Macie's) family is very appreciative for what I'm doing."Optic nerve hypoplasia is one of the leading causes of blindness in children. The disorder causes fibers in the eyes' nerves to stop growing. The procedure the Morses have decided on, which is only offered in China, gives the patient cord blood stemcell injections. The blood comes from donated umbilical cords.Though Macie's operation would be considered a case study, the injections have been performed on 10 children, all of which experienced improvements in their vision. Macie has no vision in one eye and very poor vision in the other.When Yaussi informed the Morses he had decided to help raise money for the injection, the family flooded with emotion."Macie started crying. Her mom got real emotional," Yaussi said.Said Rochelle: "I don't even have words for it. People just don't do that nowadays."Yaussi met the Morses through his mom, Carol Yaussi, who works with Rochelle at Poudre High School. When the two became friends and introduced their families to each other, Yaussi found out about Macie's condition.He said he created the fund because he had the ability to help a family friend in need.The fundraiser isn't distracting Yaussi from his kicking. Heading into tonight's road game against the Omaha Beef, he ranks first among United Indoor Football League kickers in scoring with 56 points, first in field goals per game with 1.83, and first in point-after-touchdown percentage at 92 percent (23-for-25).

http://www.greeleytrib.com/article/20080426/SPORTS/824980934

Treatment helps child see

2008-04-20T15:19:00.000-07:00

Treatment helps child see
By DONNA HICKMAN
(Published April 20, 2008)
BELGRADE, Mo. — When 6-year-old Lydia Olmsted wakes up at her grandmother's home in Belgrade, she sits up in bed and tells her, "Daylight Granny, time to get up!" It's music to Joan Olmsted's ears.
For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don't have enough nerve fibers for the brain to receive visual cues from the eyes.

But thanks to stem cell treatments in China in January, Lydia can see light.
It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.
"I can see the light under the bathroom door, but I can't see colors," Lydia explained in a visit to the Daily Journal earlier this month. "I'd like to see the color yellow because that's my favorite."
The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia's mom, Juli, found out about it, she didn't know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.
"We are not sure yet what the outcome will be," said Juli. "The process will take at least a year. She is only the seventh child to do this as part of a case study. They don't guarantee anything."
The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia's eyes had become atrophied from lack of use. The stem cells will become Lydia's optic nerve cells.
The company conducting the study is Beike BioTech.
There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.
The Park Hills Lions Club gave $1,000 to Lydia's Lights, the name of her fundraising effort.
Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It's where Juli grew up.
Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.
"One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing," she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.
"But there have been other calls and e-mails from people we don't know," said Joan. "People are so generous and so concerned. Everywhere I go, people say, 'Hello, how's Lydia?'"
For a month, doctors put umbilical stem cells into Lydia's body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.
They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter's treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.
After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!
"Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do," said Juli. "She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it."
All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.
"She gives us IVs often because she had so many in China," said Joan.
Lydia admits when doctors began the stem cell treatment, they told her it wouldn't hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn't hurt when she used it on them.
Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group Alabama. At 4 or 5, she fell in love with Toby Keith, whom she has always called "my boy."
By the time she turned 5, she had replaced Keith with Ryan Seacrest. His is the face she'd most like to see.
"I listen to his show on the radio and I like American Idol," she explained.
She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.
She loves to ride horses and "go farming" with Joan and Lydia's uncle Chuck.
Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.
Juli is so proud of her daughter, calling her a "very adjusted, very trusting, amazing little girl."
"You have to have a little bit of a dream in order to do this," Juli explained. "We pray for full sight and function, but at the same time, we take it step by step."
http://www.fortmilltimes.com/124/story/138669.html

Yaussi kicks it for Macie

2008-04-11T15:17:00.000-07:00

Yaussi kicks it for Macie in home openerBY HAP FRY HapFry@coloradoan.com
LOVELAND - Macie Morse is trying to see, and Deric Yaussi is putting his best foot forward to ensure that she does.
The Colorado Ice kicker booted two field goals and added two extra points in the Ice's home-opener Thursday night against the Billings Outlaws.
Yaussi hopes to help raise aproximately $40,000 for Morse, who suffers from optic nerve hypoplasia (ONH) and is nearly blind.
That money would be used to send Morse to China where she would receive a stem-cell injection that has been successful in treating people with ONH.
Morse and Yaussi filmed a segment, which was shown at halftime, together urging people to donate money and or sponsor him by making a financial pledge for every point he scores this season.
A silent Bud Center crowd then saw a video of what Morse's every day experiences are like.
"I pretty much cried all the way through it," said Rochelle Morse, Macie's mother. "It's just unbelievable that this is all happening. Just the generosity of all the fans, the Ice and Deric Yaussi has been incredible."

Kicker points worth more than wins for local teen

2008-04-10T15:14:00.000-07:00

Colorado Ice kicker Deric Yaussi, left, has started a fund to benefit Macie Morse, right, who suffers from blindness caused by optic nerve hypoplasia. The fund, known as Kickin it for Macie, accepts pledge amounts for every point Yaussi kicks this season.
Kickin It for Macie
To help Macie Morse out, send donations to Macie's Vision Quest, c/o Warren Federal Credit Union, P.O. Box 1319, Wellington, CO, 80549.
What is optic nerve hypoplasia?
"Hypoplasia" means smaller than normal. Optic nerve hypoplasia (ONH) refers to small or underdevelopment of the nerve which transmits vision signals from the eye to the brain. This is usually associated with permanent vision loss, which may be mild or severe. ONH may affect either one or both eyes.Source: American Association for Pediactric Ophthamology and Strabismus.

Kicker's points worth more than wins for local teenBY SEAN DUFF SeanDuff@coloradoan.com
Every point Colorado Ice kicker Deric Yaussi scores is critical for his football team.
But the field goals and extra points he puts through the uprights are crucial for Macie Morse, a 15-year-old ninth grader who attends Wellington Junior High School.

Morse, an Idaho native whose family moved eight years ago to Wellington, was born with optic nerve hypoplasia.
The medical definition of hypoplasia means smaller than normal. Optic nerve hypoplasia refers to underdevelopment of the nerve which transmits vision signals from the eye to the brain.
In layman's terms, she can't see.
Morse, an articulate, thoughtful teen-ager, described it this way.
"It's the cord that connects from the eye to the brain that sends information from what your eye sees to the brain," Morse said. "That cord didn't fully develop. My left eye didn't develop at all; my right eye has a little bit."
Morse said she can see well enough out of her right eye to walk, and she can read print if it's 3 or 4 inches from her face. That's about the extent of her vision, though.
The impairment has made life difficult for Morse, her mother, Rochelle Morse, said.
"It's not pretty how she is treated at school," Rochelle said. "She gets made fun of a lot; she takes a lot of physical abuse. Kids are mean; they're awful, tripping her and pushing her into lockers and stuff."
It was during these trying times that Randy Yaussi, Deric's father and a longtime Poudre School District educator and coach, was filling in as principal at Wellington Junior High.
"He got to see how Macie was treated," Morse said. "He said he had to go into his office with tears in his eyes."
There is no treatment for OPN in the United States. But while searching the Internet one day, Morse came across a treatment program in China.
"They're doing stem-cell injections in China on kids with ONH that seem to be working," Morse said. "They're actually all different kinds of places - Mexico, Dominican Republic, South Africa. The reason we chose China is they're adding nerve growth as well."
Morse said the cost of the treatment and travel to China is about $30,000. And that's where the Yaussi family came up with a plan to help raise money for Macie Morse.
"I've known Macie for a while," said Deric Yaussi, a former Poudre High student whose mother, Carol, and Rochelle Morse work together at the school. "I wanted to do something to help her get her sight. The best position for me playing for the Ice was to have a fundraiser. I can raise money for every point I make."
So Yaussi started Kickin It for Macie, where people can pledge any amount of money for every point he makes in the United Indoor Football league season or just give an outright donation. The Ice (1-3) plays its home opener tonight against the Billings Outlaws, and Yaussi has scored 35points in the first four games.
"She's a great girl," Yaussi said. "Some of the things she's had to go through, like getting her head pushed into a locker, are things no one should have to go through."
Rochelle Morse said about $2,000 has been raised so far. She's hoping the Kickin It for Macie campaign will bring her family much closer to their goal of $30,000. The family is hoping to go to China by Christmas.
"The more I score, the more I help the team and help Macie," Yaussi said. "It benefits both."
Macie, who describes Yaussi as a "football hunk," says she is very happy at having a chance to see.
"I can't imagine what it would be like," Macie said. "I've dreamt about it forever.
"My first thing I want to see is my mom. Then I want to see as much as possible."
http://www.coloradoan.com/apps/pbcs.dll/article?AID=/20080410/SPORTS/804100352/1006/SPORTS

Girl looks to gain sight in China

2008-04-06T15:21:00.000-07:00

Associated Press
April 6, 2008
Sedalia, Mo. — Rylea Bartlett can see the freckles on her grandmother’s face and distinguish lip gloss on her mother’s mouth.
The 6-year-old’s progress has raised the hopes of another young girl who has the same optic nerve disorder.
Savannah Watring and her family are making arrangements to travel to China, where they hope an experimental treatment will give the 7-year-old sight.
“I can’t help but get excited,” said RaVana Watring, Savannah’s grandmother.
Savannah was born with optic nerve hypoplasia, the leading cause of blindness in children, according to Cassandra Fink, supervisor of clinical trials at the Vision Center in Children’s Hospital Los Angeles.
It happens when the optic nerve fails to develop in utero, but doctors aren’t sure what causes the condition. Swedish researchers found it occurs in 10.9 children per 10,000.
ONH can cause hormonal problems and developmental delays, but loss of sight is the only condition Savannah has experienced.
Savannah’s family noticed early on that she rolled her eyes around a lot and that noisy places bothered her. At about 8 weeks, they noticed her eyes weren’t tracking objects like normal babies do. A Columbia ophthalmologist confirmed what they had feared: Savannah was blind.
“I kept thinking it was something that could be fixed,” RaVana Watring said. “And when they said it couldn’t, and never, I fell apart.”
The family’s hope brightened in September, when they read a story in The Sedalia Democrat about a Missouri girl with ONH who began seeing after stem cell treatments in China. They contacted Dawn Bartlett, Rylea’s mother, and learned her vision has been steadily improving since the treatment.
Savannah’s family has started the process of traveling to China, where they’re expected to spend about 30 days as she receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine and are expected to generate growth of the optic nerves.
Fink is skeptical, saying she’s only heard of three or four children who have had the procedure and that the risk of doing it in China is unknown because they don’t know the research behind it.
It hasn’t stopped Savannah and her family.
The procedure is expected to cost about $50,000 and the family has started a fundraising campaign, already gathering around $20,000 through a dance, donation cans and sales of clothing and jewelry. A benefit dinner, raffle and auction are planned Dec. 9 in Tipton.
http://www2.ljworld.com/news/2008/apr/06/girl_looks_gain_sight_china/

Child's sight improves after experimental treatment

2008-03-31T15:02:00.000-07:00

Helping Lydia see the light

By DONNA HICKMANDaily Journal Staff Writer
Mar 31, 2008 - 10:44:19 CDT

Video Clip(s)
·
Meet Lydia and hear her talk about her life.
When 6-year-old Lydia Olmsted wakes up at her grandmother’s home in Belgrade this week, she sits up in bed and tells her, “Daylight Granny, time to get up!” It’s music to Joan Olmsted’s ears.For the first time, Lydia is seeing light like the sun bursting through the windows at sunrise. She has Septo-Optic Dysplasia. That means her eyes don’t have enough nerve fibers for the brain to receive visual cues from the eyes. But thanks to stem cell treatments in China in January, Lydia can see light. It started with the lights still on the Christmas trees in the hospital where she was treated. Lydia could see them. And what light she could see did not hurt her eyes as it did before.“I can see the light under the bathroom door, but I can’t see colors,” Lydia explained in a visit to the Daily Journal Wednesday. “I’d like to see the color yellow because that’s my favorite.”The stem cell treatment is experimental and is not performed in the U.S. Joan said until Lydia’s mom, Juli, found out about it, she didn’t know there was anything that could help her daughter see. A little girl who was the first to be treated 8 month ago is now seeing colors.“We are not sure yet what the outcome will be,” said Juli, interviewed by phone. “The process will take at least a year. She is only the 7th child to do this as part of a case study. They don’t guarantee anything.”The stem cells are thought to help the body repair itself. As Juli explains it, the optic tissue in Lydia’s eyes had become atrophied from lack of use. The stem cells will become Lydia’s optic nerve cells.The company conducting the study is Beike BioTech. Find out more about the procedure at http://www.stemcellchina.com/.There is a lot of medical follow-up to be done and Lydia expected to need expensive hyperbaric treatments when she returned, but those are on hold for now. Still, funds are needed to pay the additional medical costs. Another trip to China could be needed next year. Lydia has regular cat scans and uses eye drops as doctors check to see if her optic nerve is developing.The Park Hills Lions Club gave $1,000 to Lydia’s Lights, the name of her fundraising effort.Lydia and her mother live in Columbia, but Lydia spent her spring break week in Belgrade with her grandmother. It’s where Juli grew up.Since the story first ran in the Daily Journal on Jan. 9, the family has been contacted by others who have loved ones with the same eye disorder. Lydia is mystified by all the interest in her.“One day, we were getting ready to go to Bismarck and somebody called and they were wondering how I was doing,” she recalled. Her grandmother explained the caller was someone she knew that Lydia did not.“But there have been other calls and e-mails from people we don’t know,” said Joan. “People are so generous and so concerned. Everywhere I go, people say, ‘Hello, how’s Lydia?’”For a month, doctors put umbilical stem cells into Lydia’s body through an intravenous injection and four injections into her spine. It cost about $18,000. Such experimental treatments done in China have come under fire from some medical researchers in the U.S.They caution the results have not been proven. Juli said she knew about all the criticism as she arranged for her daughter’s treatment. She said she tells others considering their options to carefully weigh the pros and cons. She believes it was right for Lydia. She says she has faith in the process.After the second treatment, Lydia began to say she saw the lights on the Christmas tree. Juli was elated!“Pretty quickly, I saw her pupils begin to react to light appropriately as they are supposed to do,” said Juli. “She notices more light. It used to be she could see it only a foot away, now she can see it 6-8 feet away. She can see a flashlight and point to it.”All the medical attention has prompted her to make up her own IV kit using a hair clip, a plastic watch band, a couple of chenille pipe cleaners, and a Luna bar wrapper.“She gives us IVs often because she had so many in China,” said Joan.Lydia admits when doctors began the stem cell treatment, they told her it wouldn’t hurt. But it did. So, when her treatment was over, she went to the doctors and nurses with her IV kit and told them it wouldn’t hurt when she used it on them.Lydia has always loved music and connects with singers and personalities. When she was 3 and 4, she was a fan of the group, “Alabama.” At 4 or 5, she fell in love with Toby Keith who she has always called "my boy."By the time she turned 5, she had replaced Keith with Ryan Secrest. His is the face she’d most like to see.“I listen to his show on the radio and I like American Idol,” she explained. She is also a dancer and her grandmother says she never saw anyone who could twirl as long as Lydia can.She loves to ride horses and “go farming” with Joan and Lydia’s uncle Chuck. Lydia writes Braille and reads Braille. She describes herself as independent, trying to open things herself and to get dressed on her own.Juli is so proud of her daughter, calling her a “very adjusted, very trusting, amazing little girl.”“You have to have a little bit of a dream in order to do this,” Juli explained. “We pray for full sight and function, but at the same time, we take it step by step.”
http://www.mydjconnection.com/articles/2008/03/31/news/doc47f1027db74a5062745795.txt

A Ray of Hope

2008-02-17T14:58:00.000-08:00

One note for correction the treatment does not cost $75,000 it costs $18,000 $24,000
K
A ray of hope
Ellicott family is trying to raise $75,000 to take blind son to China for a stem cell treatment not approved in the U.S.
By BRIAN NEWSOME
2008-02-17 01:12:00
THE GAZETTE
Blood from an umbilical cord is injected into the spine. In a matter of weeks, or even days, children who were born sightless report being able to see more light and make out shapes. It sounds as if it could be the latest treatment offered at a top university hospital. And Katrina Stewart’s efforts to procure the procedure for her visually impaired son are like those of thousands of parents who canvass the country in search of health care’s latest offerings of hope. The difference is, this is China.
Stewart, who lives in Ellicott, is trying to raise $75,000 to take her 7-year-old boy halfway around the world for a stem cell procedure praised as a miracle cure by parents and patients but questioned by some scientists in the West who want more proof that it works. The government of China has spent millions on the biotech industry and is extending its advancements to patients worldwide. One Chinese company benefiting from the invest- ment, Beike Biotechnology, Co., offers the umbilical stem cell therapy to Americans at a time when regulation and politics have stymied such procedures in the U.S. Umbilical stem cells are not from embryos, a subject of intense political debate. Even so, these stem cell procedures have been criticized by some research purists who say the treatments lack the extensive clinical tests required of medical advancements here. Beike and its advocates argue that Western bureaucracy is keeping life-changing care from patients who can’t wait decades. For Stewart, the question is simple: Can it help Brandon? She is soliciting people for tens of thousands of dollars in hopes that her son — visually impaired since birth — can recognize faces and distinguish steps from cracks in the sidewalk. They would be small victories his doctor here admits he’ll likely never have with treatment that’s available in the U.S. Beike has treated eight children with Brandon’s form of blindness, and all have reportedly gained increased sight. Stewart doesn’t expect 20/20 vision for her son. She just doesn’t want to be left with the what-ifs. “I’m willing to accept any outcome, but if I don’t try I will always wonder.” Health risks, so far, have been low. The two main risks, infection or a misplaced needle in the spinal canal, have never occurred, according to Beike. Brandon’s story When he was 6 months old, Brandon Stewart was diagnosed with optic nerve hypoplasia, in which the optic nerve fails to fully develop in utero. It’s one of the most common causes of childhood blindness. Brandon, a soft-spoken child with a penchant for cupcakes, does not live in total darkness. He can make out a few colors and foggy objects or people when they are just a few inches in front of him. Yet he fears cracks in the sidewalk because they appear to be steps, and trees because their branches hit when he gets too close. In 2004, the Stewarts left Garden City, Kan., for the Pikes Peak region, where Brandon could attend The Colorado School for the Deaf and the Blind and have access to better health care. Katrina quit her job as a Finney County sheriff’s deputy. Her husband, John, quit his job as an assistant manager of a trucking company. He owns a dump truck and is self-employed. She helps him run his business. The boy, who had fallen behind his schoolmates in Kansas, has flourished at the Colorado Springs school. Even so, his parents struggle to come to terms with his blindness. Katrina Stewart said Brandon admires his dad and talks about wanting to drive some day. Such statements hurt. “It’s hard for me to tell him that he can’t because of his eyes,” she said. She said it’s emotionally difficult to explain the world around Brandon that his 12-year-old sister, Courtney Harris, and 2-year-old brother, Nicholas Stewart, can see for themselves. “Going up to the mountains, he sits there and looks bored or looks down,” she said. A story of hope Late last year, Stewart saw a news report about a girl about Brandon’s age who had the same condition. The girl had been treated by Beike, Stewart said, and her family reported that she could see in ways doctors here hadn’t thought possible. The story made Stewart cry. She turned to the Internet and found a world of similar claims from parents and patients: Children with severe visual impairments could recognize their parents and the world around them. That led her to Kirshner Ross-Vaden, a suburban Chicago nurse who is Beike’s vice president of the Foreign Patient Division and lead medical consultant. The 7-year-old company began taking foreign patients in 2005. Since then, it has treat ed 2,500 people, Chinese and foreign, for a variety of ailments, including brain injuries and degenerative diseases. Although Beike reports a 100 percent success rate for optic nerve hypoplasia, results for other medical problems have been mixed. The Stewarts applied for treatment, and Brandon was found to meet the criteria. That, though, may have been the easy part. The Stewarts concede that raising $75,000 to pay for a little-known treatment thousands of miles away could be a tough sell. Already, one organization, which she asked not be named, declined to help. Other people have confused umbilical stem cells with embryonic stem cells, which have been hotly debated as a rightto-life issue. The family’s dump truck business has been sluggish this winter. And although other families pursuing the treatment have taken out a second mortgage or tapped their home equity, the Stewarts rent their home. Persuasive stories The family’s pitch includes stories of children such as 2-year-old Cameron Petersen. The boy was 3 months old when he was diagnosed with optic nerve hypoplasia and pituitary problems that left him blind and sickly, said his grandmother, Carol Petersen, of Port Charlotte, Fla. “He was at Children’s Hospital more often than not,” she said. Today, she said, he plays like a healthy child and appears to see new objects. In her mind, there’s 90 percent improvement. She points to a time in church when Cameron began looking up at the bright lights. “Cameron started turning in circles watching these lights,” she said. On another occasion, the boy’s brother took a toy out of a diaper bag. Cameron looked at his brother and took the toy back. “I know that there was no way on earth that Cameron possibly could have done that before,” she said. Adult patients, too, have returned from China with tales of newfound abilities from the same treatment. Jim Savage, a Houston lawyer who became a quadriplegic after a diving accident, told The Associated Press in a recent story about the procedure that he was able to move his right arm again for the first time after his accident. He also reported greater abdominal strength and more sensation in his skin. How it works At Beike, which works with several Chinese hospitals, umbilical stem cells are injected into the spinal canal, where they essentially bathe the spinal cord and brain. Because the cells have not yet become specialized, in theory they can repair damaged nerve cells and restart the development of healthy ones. Dr. David Lee, Brandon’s Colorado Springs ophthalmologist, called it an “interesting idea.” Considering the lack of options available here and the seemingly low risks of the procedure, he said he was not opposed to the family’s plans. “I think that it’s one of these things where it makes sense that it could potentially help,” he said. At the same time, he said, the Stewarts should temper their expectations. With the expense and travel, there’s potential for disappointment if significant results don’t come. Beike, and China’s biotech industry in general, have taken criticism from some Western doctors who fear the treatment is being rushed to the marketplace without the scientific rigor of places like the United States. They say patients’ testimonies could result from a placebo effect, in which — considering the cost and the journey — they simply believe there has been change. Petersen dismisses that idea. “His favorite cartoon,” she says about Cameron, “instead of putting his ear toward the sound, now he’ll look at the TV. He just sits there and stares at it.” Ross-Vaden, the Beike representative who was in China and answered questions by e-mail, said the company has kept extensive documentation and is now translating its information from Chinese to English. She said China has outpaced the U.S. in biotech science because the government has made it a priority and funneled millions into biotech. It could be a decade or two before Beike’s procedures come stateside, if at all, she said. Patent disputes, the politics over embryonic stem cells and a preoccupation with clinical trials are roadblocks to approval in the U.S., she and others said. A middle ground Dr. Peter A. Singer of Toronto’s McLaughlin-Rotman Centre for Global Health was part of a team that conducted an in-depth study of China’s biotech industry, including Beike. The study was published in January’s edition of “Nature Biotechnology.” He considers himself a Beike “agnostic.” As a physician, he believes patients’ stories matter, while as a scientist he also believes people eventually deserve hard proof that something works. Beike, he said, needs to find a middle ground between anecdotes and proven data. “There comes a point in time where families like the one in Colorado deserve a better answer than ‘Well, we think it works or we wouldn’t be doing it, and you should just come and give it a try.’” Katrina Stewart, though, needs no convincing. She talks of the children like Brandon who have been treated having a “brightness” about them when they look around. She said she’ll continue to learn Braille, help Brandon adapt to his dark world and come to terms with his disability. The difference, she said, is being able to say to herself she’s tried everything. At the same time, expectations are hard to hide. On a sunny afternoon at the school, where she and John have come to pick Brandon up for a doctor’s appointment, she talks about the trip. When Brandon asks why they would go to China, she tells him his eyes are “broke” and need to be “fixed.” The boy asks, “If they don’t fix them what are we going to do?” She cries.

http://www.gazette.com/articles/brandon_33218___article.html/beike_stewart.html

Update on Baby Jackson's Vision Progress post treatment

2008-01-07T06:19:00.000-08:00

Comment from stem cell girl:

Jackson was in China in Novemebr/December. He was 10 months old at the time of his treatment and thus is the youngest ONH case treated thus far. Below is an update from his mother about his progress thus far.

Sorry it has taken me so long to post an update on Jackson. He isdoing GREAT!! Aside from being sick for the last 3 weeks (common coldetc..) his vision seems to be getting better and better. We have ababy toy flashlight that is completely silent but has red and greenflashing lights in it. We can now hold that about 6 inches away fromhis face and he will reach for it EVERY time. Before treatment inChina, he wouldn't ever do anything of the sort. His Dr. even agreesthat his light perception is more "normal" now where before he saidJack's pupils were very slow to respond to changes in lighting. He isalso motivated to crawl now. Just yesterday, I turned away for 2seconds and he had moved about 4ft. across the floor taking about 5-10crawling steps. I am amazed. He also holds his head up a lot morenow and appears to be looking around for something to see. Before, hewould mostly sit with his head down. Well, again...sorry for thedelay with posting an update, like I said, he's been sick and it tookus a good month to get him back on US time after we returned fromHangzhou. But, it was worth every minute, every penny and everyonesprayers and kind gestures were and still are greatly appreciated. Wewill keep everyone posted on any further improvements. God bless.Rachael (Mother of Jackson)

2008-01-07T06:11:00.000-08:00

Miracle in the Making

COLUMBIA - Six-year old Lydia Olmsted has never seen her mother's face. But her mother's love is wrapped all around her.
The two share their secrets, their laugther, and their fears. It's a love they say is blind.
Doctors diagnosed Lydia with Septo-optic Dysplagia. It's a rare disorder causing the abnormal development of the optic disk, often causing blindness.
"They told us she had Optic Nerve Dysplagia and was blind. There was no treatment," explained Juli Olmsted, Lydia's mother.
The Olmsteds adjusted to the disorder the best they could until they found hope from the most unusual source. It was an article in the National Inquirer that said a blind girl could now see.
"There was finally some hope. When your child is first diagnosed they always tell you there's nothing to do here are resources," said Juli. "It's difficult when you find out that and then all the sudden there's treatment options and there's hope."
After researching the article Juli contacted the doctors who restored sight.
"We told her there were some doctors in China that could make people like here able to see with her eyes. I asked her to see if she would be interested in trying that," said Julie. "We have fairly adult type conversation you can't really pull the wool over her eyes."
The Olmsteds leave for China this month, where Lydia will under go five stem-cell treatments. Lydia says she's not scared, she's always been brave, and she has her very "brave lion" to keep her safe. \
"I'm excited to fly on the plane and getting to see," said Lydia. She already knows what she wants to see.
"I asked what whe would like to see with her eyes she said bugs. And then I asked her who she would like to see if she could see a person. This kind of shows were I stand, she said Ryan Seacrest," laughed Juli.
"Well, because, I have a crush on him," said Lydia.
They say their only worry is keeping their carry on bags under 50 pounds.
And the rest... well they'll just have to wait and see.
Click here for video link: http://www.komu.com/satellite/SatelliteRender/KOMU.com/ba8a4513-c0a8-2f11-0063-9bd94c70b769/52402cdd-80ce-0971-0183-ac0f42dfed7c

Stay away from Olfactory Ensheathing Cell Treatments in Beijing

2008-01-06T06:03:00.000-08:00

Comment From Stem Cell Girl:

I have been saying “stay away” from this group and their OEC treatments for the past two years. Glad to know someone in the world agrees with me.

Dutch study warns against Chinese stem-cell treatments
Leonard Van Den Berg, a neurologist at University Medical Centre in Utrecht, Netherlands, reported on followup studies of patients who went to China for treatment with a type of stem cell found in human fetal nasal lining (olfactory ensheathing cells, or OECs).
At Beijing West Hill Hospital and Rehabilitation Center, OECs are injected into the brains of ALS patients, at a cost of approximately $25,000.
A Dutch study followed 12 patients who went to Beijing. Seven reported very short-term improvement in functioning or an increase in strength immediately after the injections, lasting less than a day. Three saw no change, and two said they deteriorated.
ALSFRS scores, respiratory measurements and strength tests resumed a downward course in all cases. Of the 10 patients who later died, median survival time was 2.9 years. One person developed a serious blood clot, and another developed pneumonia.
Van Den Berg recommended that people not seek stem-cell treatments in Beijing. He also reported that the West Hill center has since closed, because the Chinese government considered it too “mercantile.”

Carl's vision appears to be returning

2008-01-05T05:31:00.000-08:00

Ozarks Local News

Carl Stevens whose story about planning to go to China for stem cell treatments for his blindness was published in the the News-Leader in December is getting light flashes in his vision after beginning the treatments, according his wife, Vickie Stevens.
Stevens, 57, of Garrison, checked into a Hangzhou City, China, hospital Dec. 28 for a month of treatment.
He said he believed his only hope to regain his sight was to travel to China for umbilical cord stem cell treatments not available in the United States.
Stevens lost his eyesight four years ago during a long battle with strep B pneumonia.
The treatments, which use the umbilical cord blood of live-born babies, are not available in the United States because of FDA regulations and other processes.

Comment from stem cell girl:
1/7/08

I have just found out that Carl has responded positivlt to the flash light test. He is also showing signs of a pupil response to light for the first time since he was left blind!

Hannah Montana Tickets Helping Girl Get Eye Surgery

2008-01-03T05:02:00.000-08:00

By Ryan Duffy
First Coast News

ST. AUGUSTINE, FL -- Emily, Devin, Emily and Allison from St. Augustine hadn't met six year old Rylee Lovett until Wednesday.

But they had already decided to give her a very valuable gift.

It is the hottest concert ticket in the country, Hannah Montana, and the girls were able to snag four to the Jacksonville show.

They were thrilled to go, but then they saw Rylee's story.

"We decided to give tickets to the little girl Rylee so she could auction them off and make lots of money for her trip to China," says Devin Schooley.

"I understand what a big deal it is, I remember being a little girl and loving something and it's so sweet of these kids, such a nice thing," says Rylee's mom, Shayla Lovett.

Rylee has a rare eye condition and is nearly blind.

There was no hope of improvement until Rylee's parents heard of an operation being done in China that has had good results.

But the operation costs $60,000.

So the Lovett's will raffle off the Hannah Montana tickets.

Emily, Devin, Emily and Allison won't get to go see Hannah but they say it's worth it for their new friend Rylee.

"We thought Hannah Montana in two years wouldn't be that much to us, but this little girl can see and that's a lifetime," says Devin.

So far the Lovetts raised $25,000.

Click here to link to the TV web site with her Video clip. http://www.firstcoastnews.com/news/local/news-article.aspx?storyid=99140

Rylea Update and DVD on ONH/SOD

2008-01-02T18:21:00.000-08:00

Here is just a very quick up date on our lovely Miss Rylea who has just had another evaluation with Dr. Brothers. She is now able to see colors!!

We have suspected for the past couple of months that she was indeed seeing some color but now we know for certain that she is. Even better her vision with her glasses on has improved since just a few weeks ago and is now rated at 20/1200. It is unknown how much difference the glasses are making for her but Dr. Bothers feels they might be “sharpening” the images for her.
Rylea is now 5 months post treatment and is still going strong with her continual improvements in vision. She has not done any Hyperbarics at this point.

The photos shown here were all taken this past November while we were in Florida at the Cord Blood Medical Awareness Rally which was organized by Cameron Peterson's Grandmother Carol.

We had families from not only Florida but from all over the United States. Some of the parents were able to talk about what the treatments derived from Umbilical Cord Blood meant to them and their children.

............This young man took center stage after the "adults" were done and belted out a couple of amazing tunes for our visitors. He and his family will be heading for China this summer. They said they had their doubts until that day in the park when they saw for themselves that not only was I a real person but so were the other children that had already been treated and the results they had seen were measurable and concrete.

Along with me during my three days in Florida was a film crew brought in by Wealth TV. The crew spent several hours each day recording my one on one sessions with families and conducting their own interviews.

During those 3 days meeting and talking with parents one on one. I did personal evaluations of their children and reviewed the medical documents brought to me by the parents. While I was not able to tell all the parents that their children could be treated I think every one of them found valuable information and some answers.

................I have also just received my copy of the Wealth TV Special on Optic Nerve Hypoplasia which aired nation wide this past December 19th.
I do have permission from the network producer to make copies of it for parents and send those copies out but I am not allowed to post it on the Internet. This is a 30 minute special covering the treatment of ONH with stem cells and features many of the children who attended the Medical Awareness Rally in Florida. Rylea and Cameron as well as another child Tre who will be heading to China for treatment and their cases were those featured in the piece.

For those inside the USA and Canada who would like to have a copy of this DVD please let me know and I will be happy to mail one out to you free of charge. Just send me via my personal email address your full name and mailing address.

My emails are:
kirshner.ross@gmail.com
kirsh@vaden.com
kirshner@beikebiotech.com kirshner@stemcellschina.com

Tianjin, China has largest umbilical cord stem-cell storage

2007-12-31T05:26:00.000-08:00

Researchers store umbilical cord blood in the stem-cell storage bank in Tianjin in an undated photo. (Photo: Tonight Paper)
BEIJING, Dec. 31 -- Tianjin now has the largest umbilical cord blood stem-cell storage in the world.
The number of stored stem cells derived from umbilical cord blood has reached 100,000 specimens, twice the amount stored in the New York Cord Blood Bank that previously had the largest number of stem cell samples.
The umbilical cord blood bank in Tianjin is among the first batch of blood banks that have passed the state health watchdog's examination. And it is also among the first batch of blood banks accepted by an organization on Asian cord blood banks, according to a report in the Tianjin-based Tonight Paper on Sunday.
Many diseases are treated with stem cells, including Parkinson's disease, Alzheimer's disease, damaged livers and malignant tumors. Stem cells are increasingly being used in many other clinical treatments.
The stem cell bank in Tianjin has received about 1,000 domestic and international medical inquires for type matching. It has provided stem cells for 150 medical cases so far.

Amaya has finsihed her stem cell treatment in China

2007-12-31T03:23:00.000-08:00

As most of you know Amaya, a 4 year old girl with Optic Nerve Hypoplasia from Virginia Beach was in China over the holiday’s to receive her stem cell transplants.
Amaya is the 5th child in the world to receive treatment. Upon arriving in China she had some minimal level of light perception but only to bright light shined directly into her eyes at close range and her pupil response was very sluggish and minimal. She was considered to be legally blind and has had no improvement over the years in her eyesight. Amaya also had severe delays in both motor function and speech. She also is so orally defensive that she must be feed via a PEG tube.

She has just left the hospital in China and returned home and I am very happy to announce that she has indeed had some improvements. Her motor function and speech have both shown improvements as well she appears to have had visual changes as well. Her mother has reported that the night prior to leaving the hospital Amaya reached out accurately targeting her mom’s hands and grabbed her mother’s finger, she has never done this before and needless to say Ebony her mother was very surprised when it happened. Amaya is also responded with a greater reaction to the flash light test. In addition when the doctors place their hand in front of her face she becomes very unhappy and irritated. Prior to treatment she did not respond in anyway to having someone place their hand in front of her. This is an indication that she call see now that something is in front of her. Since Amaya has delays in her speech we can not ask her to tell us if and/or what she sees thus we have only this subjective data to go on but it does appear that she has responded with visual changes/improvements as a direct result of the stem cells.
Once she is reexamined by her stateside ophthalmologist we will have a clearer picture of what type and level of improvements have occurred. I will of course post an update at that time.

Here is a to her web site:
http://www.amayaslight.com/web/do/site/home?ID=274375

Horses can get stem cells in the USA and insurance pays for it so why can't we

2007-12-31T03:00:00.000-08:00

Humans not the only animals confronting the ramifications of stem cells, steroids
By Wesley Elford
I recently attended the very elite American Association of Equine Practitioners annual convention.
It is the continuing education event of the year for equine veterinarians. The most cutting-edge information is presented in the areas of reproduction, surgery, medicine and farriery. I was really impressed by the progress that is being made in all areas.
The use of stem cells has now become an accepted procedure in treating lameness in the horse. Equine medical insurance companies are covering the treatment of joint injuries with stem cells. Fat cells from the patient are used as the source of cells to culture and obtain stem cells. These are injected into injured or diseased joints. The stem cells are used by the joint cartilage or joint capsule as a source of cells to contribute to faster and more complete healing of the arthritis. The use of umbilical blood for the source of stem cell of the horse is also being perfected.
Whether for horses, humans or giraffes, genes carry the blueprint for all life on earth. Thanks to advancements in animal sciences, a specific gene of a specific horse can be looked at and identified as being healthy or not. A gene for certain diseases can be determined to be on the chromosome of a particular horse or not — and breedings can be arranged to avoid the propagation of that individual that would have a particular disease. Lethal white in paint horses would be an example.
Steroids are a problem in equine athletes also. The same type of steroid is available for normal medical use on our equine patients. These steroids are called anabolic or androgenic steroid, meaning they cause a build up of body tissues by affecting the metabolism to act in a positive and regenerative way.
The Delaware Thoroughbred Racing Commission has come out with a ban of such steroids. This racing commission has decided that they do not want horses racing with these steroids in their bodies. It takes 120 days for the steroids to come out of the horse's body. Therefore, by announcing the ban now, the horses that will be racing at the start of the spring meet in April will be all free of the drug. Horses are tested on race day in a random fashion, both with blood and urine taken. If a horse were found with steroids in its body there would be severe repercussions to owners and trainers.
Obviously, humans aren't the only animals that are performance "enhanced" with mind and body altering drugs. The beneficial use is to treat sick and debilitated animals that need to be stimulated to feel better, to eat more and to adjust what they eat to regenerate tissues and to create lots of energy. But this use should not be done to artificially make a horse stronger or more energetic. It is amazing how man can manipulate everything to his benefit.
Medicine is good and is needed to see that animals are kept healthy and strong so that they can perform up to their maximum. A horse should be asked to perform based on its own innate ability, however, not based on how man can manipulate that performance.

Comment from Stem Cell Girl:
OK how sad is it that horses have greater access to stem cell treatments in this country than we do and how irritating is it that a horse can get its stem cell transplants paid for by insurance companies but we as human beings can not.
If I am a horse in the grand ol’ USA with a joint injury I can have effective treatment with stem cells and my insurance will pay for it but if I am a human with the very same condition not only will insurance not pay for my treatment but I would have to go so far as to leave the dam country to get treatment.
This is so infuriating to me. All these patients I work with from the USA would be better off and get better medical care if they were a horse!
Good lord what is wrong with our system or perhaps I should say what is not wrong since that would yield a shorter list!
Just a small morning rant.

China trip gives St. Charles man hope

2007-12-30T13:35:00.000-08:00

By Josh Stockinger Daily Herald Staff

Dave Ozzello of St. Charles went to China in August for umbilical cord stem cell treatment of multiple sclerosis, which he has battled for more than 30 years.

Dave Ozzello's walking cane isn't getting much use these days. As for his skis, well, that's a different story.
The St. Charles man, who has battled multiple sclerosis for 31 years, reports a drastic reduction in symptoms since going to China in August for umbilical cord stem cells.
His energy's up. His balance is better. And this week the 51-year-old was hitting the slopes in Colorado.
"I have not used my cane since I came back," Ozzello said of the treatment, not yet available in the United States.
"Does it cure the disease? Absolutely not," said Ozzello, who first told his story to the Daily Herald in July. "But I absolutely would go back and do it again."
Research suggests cord blood stem cells are particularly useful in treating auto-immune diseases, such as multiple sclerosis, juvenile diabetes and lymphoma, where the body essentially attacks itself.
While the cells haven't been shown to cure these conditions, some medical experts believe they are capable of at least slowing symptoms by replacing damaged cells with ones capable of new growth.
Ozzello received four injections over four weeks in China.
The treatment, which costs $19,500, is considered experimental, but having received similar injections in other countries, Ozzello said he knew the benefits and had "high expectations."
After the first two injections, given intravenously, Ozzello said he immediately recognized an improvement in his balance. The other two, given directly into the spine, took some time to net noticeable differences.
While he still uses a brace on his right leg, Ozzello said, the circulation to his feet has returned. He's even felt good enough to shovel the drive.
Generally, he said, "I just feel a whole lot better."
Ozzello said it's been nice not needing his cane, though he did use it once to move a clock hanging up high in the kitchen.
The former competitive skier -- who spoke to us shortly before Christmas --planned to spend the holiday in the Rocky Mountains, where he was to hit the slopes for the first time since returning from China.
"I can guarantee you I'll do all right," he said.

Thought from Stem Cell Girl:

Last night I laid in my bed seeing Dave on the slopes I too have run and knowing that I helped him put his skis back on. It was a good feeling to fall asleep knowing he could again feel the rush of the speeding snow.

Praying for a brighter future

2007-12-30T12:33:00.000-08:00

Praying for a brighter future

Stem-cell treatment may give a young girl vision
12/26/07Erma Harris Managing Editor
Kacie Diane Sallee was welcomed into the world by her parents, Miranda and Stephen Sallee, on April 27, 1999. Although she had a problem during her first few days of life keeping her blood sugar level up, she was soon ready to go home with her proud parents.
“She had to stay in the hospital until she was a week old,” Miranda said. “But then, we got to take our healthy, happy baby home. She did get jaundice like most newborn babies but eventually got over it. Life was good.”
When Kacie was almost three months old a comment by a family member drew attention to a problem the young parents had not seen.
“I was talking to my Grandma Betty and Aunt Pat at church when they told me they didn’t think Kacie was using her eyes or acting like they thought she should be,” Miranda said. “I was so hurt. How dare they tell me something was wrong with my baby.”
Miranda made an appointment with Kacie’s pediatrician.
“When he asked me why we were there, I told him I was there to make my grandma happy,” Miranda said. “He told me Kacie would need to see an eye doctor.”
The eye doctor didn’t tell the Sallees what they thought they would hear – an affirmation that nothing was wrong with their baby girl. Instead the doctor said that something wasn’t right and sent them to Arkansas Children’s Hospital in Little Rock. The news they received was anything but comforting.
“We met with Dr. Brodsky at ACH,” Miranda said. “He told us that Kacie was blind and that she had something called Septo-Optic Dysplasia. When we found out that Kacie couldn’t see we were so hurt. I didn’t like to talk about it. I guess I pretended nothing was wrong. I asked myself, ‘Is this my fault? Did I do something wrong? Why did this happen to my baby?’ ”
A child with Septo-Optic Dysplasia (SOD) has under developed nerves from the eye to the brain. People with SOD may also have abnormalities of the brain and a poorly functioning pituitary gland. This condition is also known as Optic Nerve Hypoplasia and DeMorsier’s Syndrome. According to several medical sources there is no cure for this type of blindness.
“While we were at ACH Dr. Brodsky set up an appointment with the endocrinologist, Dr. Kemp, so he could check Kacie’s hormone levels,” Miranda said. “Her thyroid and cortisol levels were very low. He gave her some medicine that day. Kacie instantly became more alert and active like most babies her age. To this day, if Kacie has any stress on her body, like a broken bone or a fever over 101 degrees, we have to triple her dose of cortisol medicine. If Kacie gets very sick and cannot have her medicine she could die, because her body cannot fight off the sickness by itself.”
Miranda says they returned to ACH every three to four months to keep track of Kacie’s hormone level. Everything seemed to be fine until Kacie was 3- years old. “Then we noticed she had quit growing. She had worn the same size clothes for over a year,” Miranda said.
Kacie began receiving growth hormone shots, and is today growing and close to the size she should be for her age.
“Now that Kacie is older, we only need to go to ACH every six months,” Miranda said. “She is taking her medication, and is a healthy, growing 8- year-old girl – but, she is still blind.”
Kacie today
Today, Kacie is a third grade student at Nelson-Wilks-Herron Elementary School in Mountain Home. Although Kacie can see shadows and really bright objects, she cannot see anything clearly. This disadvantage has not kept her from learning. Her teacher, Cindy Childress, has nothing but praise for this brave little girl.
“Kacie is a sweet, hard working student,” Childress said. “Although she is visually impaired, Kacie works just as hard as the sighted students. She works independently using a Mountbatten Braille Machine to type answers, practice spelling words, work math problems and write stories or letters. Kacie has the same assignments as the other students. She is dedicated and determined to do things like her classmates.”
According to Childress, Kacie gets around the school using her cane. “Our school is quite large, and she is able to find her way to our classroom, the music room, library, computer lab, physical education room, art room, cafeteria and restroom,” Childress said.
The Mountain Home School District has a teacher for visually impaired students. She comes to Kacie’s class several times a week teaching her to use the Mountbatten Braille Machine and assisting her with class subject areas. She also brailles pages and assignments that are used in the classroom, according to Childress.
“The children love Kacie and are always eager to assist her if she needs help,” Childress said. “Kacie has a special place in my heart, and she is a joy to have in my classroom.”
Medical breakthrough
Although Kacie is learning to live with her blindness, her family continues to look for ways to improve Kacie’s life. This past summer a news report by Joy Robinson with Springfield, Mo., television KOLR 10, told the story of 6-year- old Missouri girl, Rylea, who was born with the same condition Kacie has. In July, Rylea was one of the first patients to participate in a new treatment using stem-cells taken from umbilical cords.
According to reports, Rylea and her mother traveled to Hangzhou, China, where Rylea received three spinal stem-cell transplants and two IV transplants. The results? Rylea’s eyes began to react to light; she has seen the faces of her mother, brother and sister; and was able to detect a big “E” on an eye chart across the room in the office of Dr. Larry Brothers, her Joplin, Mo., optometrist.
Kacie’s family is excited. This break-through research may be the first step in helping Kacie see the things a sighted person takes for granted.
According to the Web site for Stem Cells China and Beike Bio-Tech, “a baby’s umbilical cord, once considered medical waste, is a rich source of stem cells. Cells considered as the body’s ‘master cells.’ These are the basic building blocks of the human body, able to transform into blood, organs, tissue and components of the immune system. Stem cells reproduce and differentiate into many other cell types, including but not limited to: bone, heart, muscle and nerve. This is the miracle of cord blood.”
The treatment being offered by Stem Cells China is not available in the United States. According to its Web site the procedure takes harvested umbilical cord stem cells and transplants them into the patient. The objective is to “shock” the optic nerve with the enormous amount of stem cells, as well as additional neuron growth factor cells, which are supposed to guide the stem cells to the damaged nerve cells. This treatment is followed with treatment in a hyperbaric oxygen chamber. The results have so far, been promising.
Controversy in the United States exists with embryonic and fetal stem cells. To access these types of stem cells a fetus or embryo has to die bringing about the ethical issue of when a new life begins. The use of umbilical cord blood is largely uncontroversial. This is what is used in the stem-cell treatment in China.
The journey
The cost of the treatment may seem low when compared to medical costs in the United States, but is still expensive and not covered by insurance. The stem-cell treatment will cost Kacie’s family $30,000. Added to this will be the cost of airfare, food and housing for 30 days, passports, visas, shots and other incendentials. Family and friends are hoping to raise $50,000 to pay for the treatments and trip. If fundraising efforts go well, Kacie and her mother could be traveling to China this summer for the treatment.
Kacie’s grandmother, Diane Walker, has been employed by North Arkansas Electric Cooperative for several years. Diane and husband, Jerry, are residents of Gepp.
Kacie’s father, Stephen, was recently hired as a lineman for NAEC.
This past week, according to Kacie’s family, NAEC employees made a large donation to the family to help fund Kacie’s trip to China.
“Instead of Christmas gifts for each other, the employees of NAEC decided to donate the money they would have spent on gifts, to Kacie’s family,” said Jerry Estes with NAEC in Salem. “In addition, some made donations in amounts above the gift cost. NAEC employees wanted to help this family in their fundraising effort.”
An account in the name of Kacie Sallee has been established at First Security Bank in Mountain Home.
“When Kacie was born eight years ago, they told us there was nothing that could be done for her blindness. No hope of her ever seeing the things that we see and take for granted,” Kacie’s mother said. “Now there is hope, and it is in China. Please help us give this to Kacie. Kacie’s hope is Vision.”

Note from Stem Cell Girl;
The note that touched my soul here was the detication by all those at the company to help a child they knew not.
Reflecton: What is it in me that leads me to reach out and ask a mother to trust me? Let me take your child and cradle her in my arms, let me love and care for her, let me heal her and then allow me to return her to you so that she might see your smile.
I do not know if Justin ever saw my smile but I surely do know he felt my smile and knew my love.

Stem cell treatment in China offers girl hope for vision

2007-12-30T05:13:00.000-08:00

China offers girl hope for vision

By Sarah Nail
SEDALIA DEMOCRAT

SEDALIA, Mo. — She can belt out the songs of her favorite country singers and win prizes showing her paint pony, Benny. But Savannah Watring has never seen her Aunt Sherla's red hair. She has not seen her grandmother's lips silently mouth the words of the songs she sings. Savannah has never enjoyed the lights of the family Christmas tree. Savannah, 7, of Syracuse, was born blind. The little girl and her family hope this will be her last dark Christmas. The family believes an experimental treatment in China could give Savannah sight.
Savannah was born with optic nerve hypoplasia, which happens when a child's optic nerve fails to develop in utero. The condition can cause visual impairments to blindness, hormonal problems and developmental delays. In Savannah's case, her loss of sight is the only condition she has associated with ONH. Cassandra Fink, supervisor of clinical trials at the Vision Center in Children's Hospital Los Angeles, said optic nerve hypoplasia was the leading cause of blindness among children. The cause of ONH is unknown, but Fink said research had shown that it was neither genetic nor hereditary. Some think environmental factors during pregnancy may have something to do with the cause, but "we don't know how to pinpoint it," Fink said. Cases of ONH are undocumented in the United States. The closest figure researchers can find is a Swedish statistic that shows 10.9 children per 100,000 have ONH, or about one in 10,000, Fink said. Savannah's relatives recall her as a cranky baby. Her eyes would roll around, and noisy places seemed to bother her. "When she was first born, at about 8 weeks old, we got to noticing that she wasn't tracking like babies do," said Savannah's grandmother, RaVana Watring. Family members said they had thought something was wrong with Savannah's eyes, but tried to dismiss their concerns. An ophthalmologist in Columbia confirmed what the family feared: Savannah was blind. "I kept thinking it was something that could be fixed," RaVana Watring said. "And when they said it couldn't, and never, I fell apart." Savannah was tested to check for other complications associated with ONH, but doctors found her symptoms were isolated to blindness. Her left eye can differentiate between light and dark. 'FALSE HOPE'"Basically, they steered us away from the Internet because they said there was a lot of false hope out there," said Savannah's aunt, Sherla Hagerman. "If there would be anything that came out in the news, or any sort of media, we would get excited and listen and pay attention to it. But it never pertained to hypoplasia. It was always the retina or the eyeball itself." Savannah's parents, Brent Watring and Susie MacLaren, separated when Savannah was a baby, and Brent Watring received custody. He is on the road most of the time, buying and selling horses. RaVana Watring takes care of Savannah, and the girl's parents see her on weekends. MacLaren said that in the past, she's tried not to get too excited about potential cures. "I'm trying to be a little less cautious and a little more hopeful," she said. "I can't help but get excited about it." Hope for Savannah's sight came in an unexpected way, Hagerman said. "We never really gave up hope that there would be something there," she said. "We just didn't know when or how it was going to come to us, and never dreamed it was going to be in The Sedalia Democrat, to be honest with you. Something that we take for granted." Teresa Hiatt, a paraprofessional at Tipton Elementary School who works with Savannah, saw an article in the Sept. 9 Democrat about a Missouri girl with ONH who began seeing after she received stem cell treatments in China. She told the family to read the story. Hagerman's husband "held the paper up and I said, 'It's probably some false hope.' And he said, 'No it's not.' And I read it, and it's been crazy for six weeks. We have not stopped for one second," Hagerman said. She called Dawn Barlett, mother of Rylea Barlett, 6, who was featured in the article. The families have kept in touch. Rylea could see the large "E" on the eye chart shortly after she returned home from China, and her sight has continued to improve. "She can distinguish between lip gloss on her mom's lips and freckles on her grandma's face," Hagerman said. "She can actually say, 'Grandma, you have freckles,' and she can see them." 'RED TAPE'Barlett referred Savannah's family to a website to learn more about the procedure. RaVana Watring, her son, Savannah and MacLaren applied for passports and collected doctor's records for the trip. Family members have to send their information with a letter from China inviting them to the country to receive their visas. A woman in the United States will make the final trip arrangements. "You don't just go get a passport and say, 'I'm going to China.' There's a lot of red tape here that you have to go through," RaVana Watring said. The family is expected to stay in China for 30 days while Savannah receives four to five stem cell treatments. The stem cells, taken from umbilical cords, are injected into the spine in a procedure very similar to the way a woman in labor receives an epidural. The stem cells are supposed to generate growth of the optic nerves. "It's a matter, and I say a matter as a scientific matter of form, that's going to be thrown in the trash," Hagerman said of the stem cells. "That can actually heal something," said another aunt, Shonna Millsap. Savannah said she was excited, and not scared, about having the procedure. "We're going to go to the airport. Then we're going to go to China," she said. "We're going to get my eyes fixed, and they're just going to rub my back." The trip and procedure are expected to cost about $50,000. The cost has prompted a fundraising campaign by the family, with more than $20,000 raised through a dance, donation cans dispersed to various businesses, and sales of T-shirts, hooded sweat shirts and bracelets. A benefit dance is planned for Feb. 9 in Bunceton, Mo. "We'll sell everything we have to get her there, at this point," Hagerman said. Savannah's family has been touched by people's generosity. A young boy gave $5 at a Dairy Queen after seeing a poster about her. That's the nature of the community, RaVana Watring said. "This little community, they hang tight when someone's in need," she said.

My friend this to shall past

2007-12-23T14:17:00.000-08:00

I am lost agian...

On the 23rd night things ain't bad but things ain't right

Are we falling or flying

Are we living or dying

I guess we'll never know

The air is so heavy it could drown a butterfly

if it flew to high

Things ain't good but things ain't boreing

Grace Potter

Blind girl hopes to receive stem cell treatment in ChinaJOANNE

2007-12-20T14:56:00.000-08:00

December 20, 2007
BRATTON Bulletin Staff Writer
Sitting in her classroom, 8-year-old Kacie Sallee is like the rest of her classmates, laughing to Dr. Seuss' book, "How The Grinch Stole Christmas!"
When it's time for writing later that day, Kacie pulls out her Braille machine and keeps up with the rest of her third-grade class.

The Mountain Home girl was born with Septo-Optic Dysplasia, which is an underdevelopment of the optic nerve and pituitary gland, says her mother, Marinda Sallee. Although Kacie is blind and walks with a white cane, she can see light and some bright colors, Sallee says.
While the family has been told there is no cure for Kacie's condition, a new treatment using umbilical cord stem cells is being offered in China. With four reported success stories, it has given them hope their daughter could see for the first time.
"We were told from the beginning there was no hope for her seeing," Sallee said. "This is exciting. There's a risk of infection and spinal headaches, but it's a chance we're wanting to take."
Kacie and her mother plan to travel to China in June if they can raise the estimated $60,000 for medical treatments and travel. They hope to go with another Mountain Home resident, Josh Moore, 16, who also is blind. Moore and his mother, Melissa Kasinger, have just found out about the stem-cell treatments offered in China.
"It's overwhelming," Kasinger said. "We were told his whole life there was nothing we could do."
The procedure, which is not approved in the United States, involves injecting umbilical cord blood stem cells into the patient's bloodstream and spinal canal, according to information from Beike Biotech, a biotechnology company based in Shenzhen, China. The company supplies stem cells at 11 hospitals in China and one in Thailand for cellular therapy for a variety of diseases. The new cells replace diseased or dysfunctional cells with functional ones, according to the company.
After patients receive stem-cell treatment and return home, it is suggested they receive oxygen treatment for 1 1/2 hours a day, five days a week, for one year to help the stem cells progress, Sallee says.
So far, the four children with optic-nerve diseases who have received stem-cell treatment have reported progress, says Kirshner Ross-Vaden, a registered nurse and Chicago-based vice president of foreign patient relations for Beike Biotech. The first treatment began in June.
"No one in the world has attempted to treat it," said Ross-Vaden, adding that 25 children are scheduled to go to China for treatment within the first six months of next year. "It's really amazing. The fact that no one had any hope for their child and literally almost overnight parents who were told their children would never see, have — for the first time in their lives — a realistic option."
The Sallees first heard about the treatment in October from a Springfield, Mo., television broadcast about 5-year-old Rylea Barlett from Webb City, Mo.
Soon after receiving stem-cell treatments, Barlett, who was blind, was able to see light and recognize faces of her family up close, according to the family's online blog.
Although it's scary for Kacie to think of traveling across the globe to get treatment for her blindness, she wants to see. And if the treatments work, she hopes to take ballet classes, she says.
Mountain Home 11th-grader Josh Moore also is excited about the possibility of being able to see.
"It would be very good if it ends up working," Moore said. "I'm looking forward to it."
The Sallees hope to buy a hyperbaric oxygen chamber for the oxygen therapy and share its use with Moore, because it is cheaper buying the equipment than paying for individual treatments for one year, Marinda Sallee says.
To help raise funds for treatment for Kacie Sallee and Josh Moore, Mountain Home junior high students involved in Student Ambassadors For Everyone (SAFE) are sponsoring a student dodge ball tournament Friday.
Students can pay to watch or participate in the tournament, as well as pay money to wear a hat, have their MP-3 player or cell phone on them during the school day, School Resource Officer Tom Canta says. Students who watch or are in the tournament also will be entered in a drawing to win $20-$50 in gift cards donated by Wal-Mart.
Those in the community who want to donate money to help with treatment costs for both students can mail or drop off checks at the junior high school until the end of the school year, Canta says. The money received will be evenly divided between Sallee and Moore.
"If we can help someone get to see, we'll do it," Canta said. "To me, to have a little girl see again — who doesn't want to help that?"

Bulletin Photo by Kevin Pieper
Using a Braille machine, Kacie Sallee, 8, reads through an English paper while Nelson-Wilks-Herron Elementary School third-grade teacher Cindy Childress watches.
Want to help?
· A benefit account for 8-year-old Kacie Sallee is set up at First Security Bank. Donations will be used for medical treatment and travel costs.
· A fundraiser to help pay for medical treatment and travel costs for Sallee and 16-year-old Josh Moore has begun at the Mountain Home Junior High School. Those who want to donate can write checks made out to Mountain Home Junior High School and drop them off at the office, or mail them to the junior high school C/O School Resource Officer Tom Canta, 2301 Rodeo Drive, Mountain Home, AR 72653. Those with questions about the fundraiser can call the junior high office at 425-1231.

Bulletin Photo by Kevin Pieper
Third-grade student Lauren Wilber, 9, helps Kacie Sallee, 8, with a project Tuesday during class at Nelson-Wilks-Herron Elementary School. Sallee and her family hope to travel to China this summer for a new treatment using umbilical cord stem cells that could help restore her sight.

Trinity girl to receive treatment in China for medical disorder

2007-12-19T13:42:00.000-08:00

Daily photo by Brennen Smith
Jordan Stover, right, and her sister, Taelor.
By Ronnie Thomas
TRINITY — Jordan Stover sat beside her older sister, Taelor, in their Trinity home and opened Christmas gifts.
As she ripped the wrapping, their mother asked if she had gotten new shoes. Jordan jabbed a forefinger into the air.
“She’s saying, ‘Just a minute, I’ll let you know,’ ” Sabrina Stover said.
Jordan apparently hears and understands.
“Tell her to clean up her room,” said Stover. “She shuts down like a typical 12-year-old.”
But her vocabulary is limited to single words. For most of her life, the family searched for a diagnosis. They got it less than a month ago from a doctor at Columbia University Medical Center in New York. He identified glucose transporter type 1 deficiency syndrome in 1991. The genetic disorder doesn’t allow enough glucose to reach the brain through the spinal fluid.
Mother and child flew Wednesday to New York, where Jordan, a fourth-grader at West Morgan Elementary School, will be a part of Dr. Darrell De Vivo’s study group. They return Sunday.
From Children’s Hospital in Birmingham to the Mayo Clinic in Rochester, Minn., Stover sought to unlock the mystery. It finally came because her mother, Irene Woodall of Decatur, watched the news one evening shortly before Labor Day.
The story was about a Wisconsin woman, Vicki Barels, and her daughter, Brooke, then 9, their association with De Vivo and their subsequent trip to Hangzhou, China, where Brooke had stem cell treatments.
30-day treatment
Stover and Jordan plan to leave for the southeast China city April 1. Jordan will undergo similar treatments over 30 days.
Stover recalled the agonizing search for help. She said her daughter had her first seizure at 6 months of age and when Jordan was 18 months old, a doctor said, “Mom, go home and learn to live with it. This child will never do anything.”
Stover said she went to the Internet to find the television segment her mother had told her about. Within 20 minutes of seeing it, she had Barels on the phone.
“She told me it sounded as if Jordan had the same problem. She gave me De Vivo’s number,” Stover said.
“We couldn’t get Jordan’s blood work until Nov. 12 and sent it overnight. We got the diagnosis Nov. 20.”
Umbilical cords
During the interim, Stover made arrangements for China, which is separate from De Vivo’s work. She said the stem cells Chinese doctors use are not embryonic but are from umbilical cords of healthy babies.
Richard Stover said his daughter, who uses a walker, will undergo treatments and therapy six hours a day, six days a week.
$25,900 for treatment
He said doctors will give Jordan six different injections, intravenously or through spinal taps, at a cost of $25,900. He said insurance “pays zero.”
Sabrina Stover said dieting is the only treatment available in the United States for the syndrome. She will take a month’s supply of food for Jordan.
“She gets 2,500 calories a day, the majority coming from fat, butter and heavy whipping cream,” Stover said. “We tried the diet earlier for two years. Jordan was getting only 1,200 calories a day and was hungry all the time. Nutritionists know more now and have fine-tuned it.”
Stover said the syndrome is so rare that Jordan is only the 123rd case De Vivo has diagnosed.
“But my message is, don’t stop looking for assistance,” she said.
Taelor, 16, a junior at West Morgan High, said she and Jordan are close but they have their moments.
“We argue,” she said. “Who wins? Jordan does. She plays up to our parents.”

Big Adventure and A Cure

2007-12-07T15:43:00.000-08:00

A big adventure, and hopefully a cure, is in store for young girl
By DAVID A. WILSONDemocrat Staff
Savannah Watring, 7, Syracuse, is headed for a big adventure and hopefully a cure for her handicap-blindness.
Savannah, who was born blind, is a student at Tipton Elementary School in JoAnn Huhmann's first grade class and plans to head for China to take part in an experimental medical procedure.
A benefit dinner, drawing and auction is being held on Sunday, Dec. 9, at the Tipton Knights of Columbus to help raise the estimated $100,000 needed to fund the travel, procedure, and post-procedure treatment.
At school, Savannah, daughter of Brent Watring and Suzie MacLaren, is assisted by an aid and, although she knows her classroom well enough to navigate safely, she uses a cane to negotiate the hallways inside the school and the sidewalks outside. Although some of the games the class plays must be modified in order for Savannah to participate, with assistance, she takes part in many group class activities.
In addition to regular classroom work, Mary Watkins and Marsha Metzner assist Savannah in her Braille studies and Jennifer Turner is her orientation and mobility instructor.
Savannah loves music, according to her family. When she was an infant, all of her toys were musical. She takes piano lessons, playing by ear, and really looks forward to going to the lesson each week.
Now, at age 7, she loves all kinds of music, especially favoring country music. Her favorite radio station is Clear 99.3, and she has met Carrie and Uncle Scottie.
Savannah has sung the national anthem for WRCA rodeo events, and also can sing the Canadian anthem. She also likes gospel music and sings at church. For this year, Savannah is cutting a CD of Christmas songs.
She also loves to horseback ride, and has her own pony named Benny. Savannah has taken part in a number of rodeos, winning more than 40 ribbons for first, second and third place in barrel racing, goat-tying, and when younger, mutton-busting. Because Savannah is blind, someone, usually her stepmother Hannah Kauffman, is beside her when she competes, but she and Benny seem to work very well together. Savannah is outgrowing Benny, but even when she is too big to ride him, he will continue to be a favorite pet on the farm.
According to her family, Savannah's blindness became evident at the age of about eight weeks, when it was noticed she was not “tracking” the way most babies do at that age. After visits to several doctors and a lot of tests, she was diagnosed with Optic Nerve Hypoplasia (ONH), and her family was told she would never see.
ONH is an underdevelopment of the optic nerves. According to information available, there is rarely any identifiable cause for ONH, or any particular group that falls victim to it any more than another. It is generally considered that there is no cure, but research in China has led to experimental surgical treatment which has shown some success.
The procedure uses umbilical cord-blood stem cells. Stem cells are harvested from the umbilical cord of a newborn, and transplanted into the patient. Although the process sounds simple, it isn't. It requires some specialized techniques and more than one transplant of an estimated 10 to 15 million stem cells.
Stem cells are undifferentiated cells that, after the right chemical signals are sent by the body, can develop into specialized cells. Cord-blood stem cells are abundant and some procedures using them appear to have yielded good results.
Savannah said she hopes to leave for China in late February or early March of 2008. Her parents and her grandmother, RaVana Watring, are accompanying her on the trip. She will first go to Shanghai. Grandfather Wayne Watring will drive them to the airport. Her other grandmother is Helen Hayes, Stover.
“Then we have a three-hour taxi ride,” Savannah said.
The taxi will take the family to Nanjing to the research medical facility to have the procedure done. As her family has said, “she has nothing to lose and so much to gain” from the procedure.
The fundraiser dinner, called “Hope for Savannah's Sight,” is from 11 a.m. to 2 p.m., on Sunday, Dec. 9, at the Tipton Knights of Columbus Hall, at a cost of $10 for adults and $5 for children ages 6-12. The auction begins at 1 p.m.
Those unable to attend the dinner, may help by sending a donation to: Save Savannah's Sight, care of Commerce Bank, 232 South Osage, Tipton, Mo 65081.
For information, call 660-298-3250 or 660-221-5006.
At the Tipton Elementary School, Savannah Watring works on learning Braille assisted by Mary Watkins. (Photo provided)

Bowling Green Baby Home From Research Study in China

2007-12-06T13:21:00.000-08:00

Posted: 6:45 PM Dec 6, 2007Last Updated: 10:16 PM Dec 6, 2007Reporter: Tamara Evans

Bowling Green Baby Home From Research Study in China

A Bowling Green baby selected for a research study in China to help his eyesight is now home.
11-month old Jackson Blackford may look like your average baby, but there's more to this baby than meets the eye.
"He has a condition called optic nerve hypoplasia, it's an underdevelopment of his optic nerves"
Blackford was born with this condition that left him blind. For three and a half weeks he underwent four stem cell transfusions in China to help those nerves.
He was one of five children in the world chosen for a research study using umbilical cord stem cells.
"Not necessarily grow into big healthy nerves, but they would function better with the help of the stem cells," says Rachel Stayer, Jackson's mother.
An expensive process.
"About $60,000 dollars, none of it, not one penny is covered by insurance," says Stayer.
But a surgery with an end result worth every penny.
"Eventually the stem cells as they repair his optic nerve, he'll be able to pick up and see little objects," says Stayer.
Jackson's mother Rachel says they are already seeing improvements.
"He has since then pretty much gained alot of light perception that he didn't have before," says Stayer. "He also sits with his head up more and kinda looks around. Before he would sit with his head down," says Jackson's mother.
And there are alot of people this family wants to thank for that.
"Without the community we wouldn't have been able to take Jackson over there," says Stayer. "Without them, he may not be where he is now and its just gonna get better for the next 6 to 9 months," says Jackson's mother.
They aren't giving up on giving their baby sight anytime soon.
"I hate that he can't see, but it's definitely just God's grace that we have a possibility to help him," says Stayer.
Meanwhile, Jackson is still in need of a hyperbaric oxygen chamber that will help maintain his healthy optic nerve.
His family also plans to take Jackson back for another treatment in the next two years.

Click below for link to video:
http://www.wbko.com/news/headlines/12230236.html

2-year-old, family to travel to China for eye surgery

2007-12-01T13:24:00.000-08:00

By Rachel R. BasingerTRIBUNE-REVIEW NEWS SERVICESaturday, December 1, 2007
Jessie and Josh Fend and her husband, Josh, never anticipated traveling to China for a surgical procedure. But in June they are hoping to do just that to try and give sight to their 2-year-old son.
At 6 months, Cody was diagnosed with optic nerve hypoplasia, or ONH.

"His eye is fine, but the optic nerve that connects the eye to the brain is only half there," said his mother, who is formerly of Scottdale. "He has some light sensory, but can't see anything else."
The couple felt something was wrong soon after Cody was born.
"As a baby he would not really focus on you, so we took him to a specialist who diagnosed him with ONH," Jessie Fend said.
After getting a second opinion from a specialist at the Cleveland Clinic, the couple searched to find what might correct the problem.
The answer was devastating: nothing.
"They told us that there was no kind of operation or even a transplant that could be done because they needed his own nerves to grow," Jessie Fend said.
The only glimmer of hope is an infusion of stem cells to help Cody's nerves to grow. But the stem-cell surgery has not yet been approved in the United States.
The Fends were patient. They watched their son grow and adjust one day at a time.
"He's a normal 2-year-old who throws temper tantrums and loves to play with my pots and pans rather than a roomful of toys," Jessie Fend said. "The only thing holding him back is his vision."
Family friends from Cranberry in Butler County who have a daughter with the same condition told the Fends of a possible stem cell surgery that could allow the optic nerve to grow and give Cody sight. The Fends were ecstatic.
The only drawback: The surgery is offered in China.
"When I first heard about it I thought 'Oh my gosh, this is great,' but we were a little nervous about going to a foreign country where we don't speak the language and putting our child's fate in their hands," Jessie Fend said.
After doing research, the family learned that the stem cells used in the surgery would be from umbilical cords and not aborted embryos or fetuses. They decided to try it.
But because their insurance does not cover such operations, they have to raise $50,000 to pay for the trip and the surgery.
"We'll be in China for three weeks while Cody receives the treatments and therapies," Jessie Fend said.
Cody will receive the new stem cells intravenously and through a spinal tap and then go through therapy to help him deal with his new sight.
"They need to get the brain to realize what it's seeing," Jessie Fend said. "Sight is one thing, but vision is another.
There have been five procedures done in China on American children that have produced good results, but there is no guarantee that the surgery will restore sight.
"We're still willing to try, because the worst that could happen is that it won't work and he won't be any worse off than he is now," Jessie Fend said. "But if it even restores sight just a little more than it is now, it will be well worth it to try and give our son some shot at a normal life."
Fundraising efforts started with a bit of seed money from family members.
Shirley Morgan of Scottdale said she and her husband are committed to doing what's needed for their grandson.
"We're a little worried about them going all the way to China, but this is something that definitely has to be done because it's the biggest chance we have right now for Cody," she said.
Recently the Fends, the Morgans and several other family members participated in the Butler parade and passed out literature and pamphlets about Cody's situation.
http://www.pittsburghlive.com/x/tribunereview/news/westmoreland/s_540666.html

Daegan's chance to see

2007-11-28T13:54:00.000-08:00

EAST PRAIRIE, Mo. -- Paige and Jason
Cape Girardeau Southeast Missourian

Wednesday, November 28, 2007By Sam Blackwell ~ Southeast Missourian
EAST PRAIRIE, Mo. -- Paige and Jason Archie don't have to reinvent the wheel in their quest to help their son Daegan see. Dawn Barlett and her daughter Rylea already did that.
Like Daegan, 6-year-old Rylea was born with optic-nerve hypoplasia. Because her optic nerves did not develop normally during pregnancy, she was blind and could not detect light. Like Daegan, Rylea was given no hope of ever seeing. But in July, 10 days after Chinese doctors transplanted stem cells into her spine, the Webb City, Mo., girl began responding to a light. Last August, Rylea made out her mother's face for the first time. Doctors in China had told the family not to expect to see any change for three to six months. Rylea's eye doctor evaluated her vision at 20/400 and was astounded as anyone to see a patient with optic-nerve hypoplasia develop vision. "This is the first case ever -- since the Bible -- where someone's sight has been restored," he told the Joplin Globe. Paige Archie called Dawn Barlett after reading an Associated Press story about Rylea in the Southeast Missourian. They spoke for hours. "I wanted to know everything," Paige said. After talking to physicians, Paige and Jason became determined to give Daegan the same chance to see. That chance will cost $60,000. They discovered the stem-cell injections will cost $20,000 and the hyperbaric oxygen therapy to help the nerve cells grow after Daegan returns home are another $26,000. The 27-hour plane trips to and from China and expenses in remote Hangzhou will account for the rest. Daegan's grandmother, June Maxey, began spearheading a fund drive. Southeast Missourians have responded, particularly civic clubs in the East Prairie and New Madrid areas. So far they've raised enough money to pay for the injections. The Archies didn't know anything was different about Daegan until he was 3 months old. Their family physician said he was not tracking objects, and a pediatric ophthalmologist determined that his optic nerve never fully developed. "They said there was no hope," said Paige, who is a nurse. "They said there was no cure." One Cape Girardeau doctor, however, told them the only way Daegan could see is if they were able to regenerate nerves. But she told them that would not happen in the U.S. anytime soon. Then Paige saw the newspaper story about Rylea. Daegan is two years younger than Rylea, which doctors said is an advantage. "They say the younger the better," Paige said. More information about the treatment program is available at stemcellschina.com. Daegan loves Dolly Parton's voice and the programmed music that comes from his electronic keyboard. "Old McDonald Had a Farm" makes him smile. He is fond of swinging and trips in the family truck. "He likes to go for a ride and roll the window down and feel the wind," Jason said. Three-year-old brother Jase is protective of Daegan, making sure his parents know when he is hungry or thirsty. Daegan didn't walk until 18 months. His overall development is behind that of other 4-year-olds. The Archies think blindness is the reason. 'We really grew up' Jason and Paige were just out of their teens when Daegan was born. "We really grew up," said Jason, a farmworker. They went through the same discovery process Dawn Barlett did in trying to find help for their son. Last year they visited the Alabama School for the Blind a number of times and were prepared to relocate to Talladega. But officials at the school said Daegan needed to develop more before he would be ready to attend. They are prepared to move to St. Louis to get specialized schooling for Daegan if the umbilical cord stem-cell transplants fail. But the Archies and community and family members helping them aren't contemplating failure. They're selling "Daegan's Mission" T-shirts and pens and holding bake sales and raffles. A trust fund has been set up for him at Focus Bank's Southeast Missouri locations. In Cape Girardeau, Houch's Donuts on North Kingshighway is selling window decals to benefit Daegan. The Web site daegansfightforsight.com provides information about the family's mission and will post journal entries from China. All four members of the family will be there from June 1 to 20. Paige and Jason searched the Internet for children's names before deciding to christen their first-born Daegan. "We wanted something different, and by goodness we got it," Paige said, smiling at her son.

Institute of Regenerative Medicine Closed in Scandal

2007-11-27T16:01:00.000-08:00

It was back in late 2005 and early 2006 that I first reported the “stay away” message on this group yet still from time to time people would bring this place up on the boards as a viable option for treatment. I think we all need a reminder that it is not safe to take your child or loved one to just any stem cell provider who has a slick web site and offers a lower price. There are so many people and places out there that want to take advantage and we must be very careful. The claims below about the intentional early delivery of babies who were then used as a harvest resource seem outrageous and unreal but this is not the first time I have heard of this. The story about new born infants disappearing has also been reported by other news sources and there does seem to be some evidence behind the claims.
It is indeed cases like this that lead to fear of all stem cells. These reports are yet another indictor as to why we must stay away from clinics that use fetal stem cells. The use of any such product on any basis will only lead to abuses like those reported below.
Anytime you or someone you know is considering trying out a new clinic and or doctor please check the databases very carefully. It is not uncommon for these clinics to be shut down only to have those involved move onto a new country and set up shop again under a new name. Be very careful and do your homework, talk with others both patients and those involved in the business of stem cells. There are a few of us that are honest and sincere about our work unfortunately we are rare among the general population of those working in this field.
Kirshner

Institute of Regenerative Medicine Closed in Scandal
Stem cell clinic closed
Published on: 11/26/07.
by Sanka Price

BARBADOS IS NO LONGER in the controversial stem cell treatment business.

The Institute of Regenerative Medicine (IRM) which was named in a critical British Broadcasting Corporation (BBC) television report last December as one of the clinics using stem cells from aborted foetuses and dismembered babies, closed in May. Its closure brings to an end four contentious years of operation here.

The clinic, which was located at Hempstead, Two Mile Hill, St Michael, was forced to close its doors because business slowed after the BBC investigation was aired, said Professor Yuliy Baltaytis, the IRM's scientific director.

"The brutal attack of the BBC and the British papers ruined our business," said Baltaytis, who spoke to the SUNDAY SUN from New York.

The BBC documentary aired last December 12 and was re-screened on BBC World News on December 13, claimed that stem cells in the city of Kharkiv, Ukraine in eastern Europe were not only procured from aborted foetuses in the first trimester, but that healthy living babies may have been delivered through induced labour at two weeks'
gestation, killed, their bodies dismembered and their internal organs and brains removed for the harvest of stem cells.

Video footage of exhumed bodies detailing this barbaric practice was lodged with the Council of Europe. The Council of Europe had already investigated the maternity clinic in Kharkiv at the centre of the allegations in August 2006 and expressed its extreme concern about "the disappearance of new-born babies in the country and allegations of trafficking of babies for adoption and of foetuses for scientific purposes".

The Institute of Cryobiology in Kharkiv, that supplied the IRM with stem cells, refused to be interviewed for the BBC documentary.

Baltaytis, a Ukrainian, reiterated his condemnation of the British reports saying: "The European Commissioner said that no crime was being committed in Ukraine. They said the BBC report and Daily Mail reports were not true."

The professor, who established the first stem cell clinic here in
2002 - a rejuvenation clinic called "Vita Nova" at Villa Nova, St John, which was rebranded the IRM in 2004 - said he no longer worked for the company, and was trying to set up his own business, possibly in Europe.

Baltaytis said he would like to return here, though he couldn't say how soon he would. "I like to work in Barbados. I have some patients over there."

As to the allegations that IRM skipped the country owing their former landlord $8,000 rent; their employees', salaries; and other companies money for services provided, Baltaytis stoutly denied this.

"We paid everybody. The only one we may owe is the telephone company," he insisted.

"I personally delivered cash to [the landlord] from our chairman, Mr Irme Pakh. ... We paid staff not only money but told them they could take the furniture," he added.

A staff member however disagreed with Baltaytis. The person told the SUN an affidavit was signed by the professor agreeing to pay the National Insurance Scheme (NIS) the deductions taken from their salaries over the last two years. That apart companies were calling about monies owed.

"It is just a complete mess," the former employee said.

Quizzed on the NIS payments for staff, Baltaytis said he was "not a financial officer of the company, so I have limited knowledge. I was scientific director".

Both Cable & Wireless and the National Insurance Scheme declined to divulge information about monies owed by the IRM; but the former confirmed the service had been disconnected.

Pair Hope Stem Cells Will Let Them See

2007-11-17T13:58:00.000-08:00

The News-Leader By Donna Baxter

Man, boy both plan to go to China for umbilical cord stem cell treatments.
Ten-year-old Austin Anderson and Carl Stevens, 57, have never met, but they share more than their blindness. Both have hope that umbilical cord stem cell treatment available only in China will give them their vision.
The treatment is expensive, but both families are willing make a month-long trip and spend more than $40,000 to help their loved ones see.
"For 10 years, there was no hope, but now there is," said Kimberly May of Bolivar, mother of Austin, who was born blind.
Stevens, who lives in the southeast Christian County community of Garrison, lost his vision four years ago during a battle with strep B pneumonia.
Doctors in the United States have given neither of them any hope of recovery.
Umbilical cord stem cell treatments are limited in the United States because of FDA regulations and other processes, according to Kirshner Ross-Vaden, vice-president of foreign patient relations for Beike Biotechnology, the company that provides stem cells for treatment at 11 hospitals in China and one in Thailand.
Both families have expressed their opposition to abortion and use of embryonic stem cells from aborted babies, but the Chinese technology uses only cells from the umbilical cord blood of live born babies.
Ross-Vaden said the company uses umbilical cord stem cells only, three subsets, geared to neural tissue.
"We transplant up to 15 million cells by two delivery methods — one is intravenous and the other via lumbar puncture into the cerebral spinal fluid," she said.
Chinese doctors have treated several people, including Rylea Barlett, 6, of Webb City, and 19-month-old Cameron Petersen of Port Charlotte, Florida both with positive results, their parents report.
Dawn Barlett reported that her daughter responded to light one week after initial treatment and can now see freckles on someone's face.
Cameron began to stand on his own and crawl toward objects by the third treatment — things he'd never done before.
Austin Anderson
Austin was diagnosed at 3 months old with optic nerve hypoplasia, a birth defect that prevents him from even seeing light.
His mother remembers holding him and sobbing for days after the bad news.
"I kept crying, 'He's my baby. Why couldn't it have been me instead of him?'"
Austin's maternal grandmother, Awanda Lightwine of Monett, said she noticed one day that the baby did not react to the sun shining directly in his eyes. When she shaded his face, she saw his pupils were dilated.
"This baby can't see," she said.
Austin's parents rushed him to the doctor, where a CAT scan also revealed a pituitary defect that causes growth delay, septo optic dysplasia. He now takes daily steroid shots and hormone pills for his growth delay.
If he could see, Lightwine said, it might draw him out of the autism that also surfaced as he got older.
His grandmother describes Austin as a "such a sweetie."
"I can't imagine what it would like to be blind and autistic. His family loves him to death and we're willing to go to the ends of the earth to help him," Lightwine said.
His other grandmother, "Mee Mee" Debbie McGinnis of Bolivar, said she fixes his favorite foods with as many calories as possible on weekends when he comes home from the Missouri School for the Blind in St. Louis.
"I pile the butter on the mashed potatoes ... he's so light ... he needs to have some muscle when he goes for his surgery."
May, 33, a single mother of three, has set a goal to take Austin to China by March — if she can raise the money.
"If we don't have the money then, we'll wait to go whenever we do have it."
May said Austin's eye doctor Scott Atkinson has "an open mind" about the treatment.
"If there's any hope, this is going to have to be it," she said.
Friends, co-workers and family members have several fundraisers in the works to help raise the $25,000 cost of the treatment plus $15,000- $20,000 for travel and living expenses in China.
Four children with Austin Anderson's diagnosis have been treated to date, with a fifth scheduled for December.
Carl Stevens
Stevens thought he just had the flu when he didn't feel well for several days in January 2004.
"I kept getting sicker and sicker until I finally decided I'd better go to the doctor," he recalled.
After receiving fluids, his oxygen level was still too low, so he was taken by ambulance to Cox South hospital. There he was told he needed oxygen for about 48 hours and then could go home.
Instead, Stevens' condition plummeted and the medical team induced a coma to keep him still.
At one point, his kidneys shut down; 18 days later, Carl said, "I woke up and I was blind."
He had developed septic shock and toxic shock syndrome, his wife, Vickie, said. The infection spread into his blood and he was given about one-half of one percent chance to survive.
Carl recalled: "When I woke up from that coma, the first thing I remember was the kidney doctor saying to me, 'I've been here 30 years and you're the sickest patient I've ever had that lived.'"
Vickie remembered his doctor said Carl's blindness was caused by ischemic optic neuropathy.
"When the nurse told me he had a vision problem ... it was just one more knockdown after we thought we'd gotten through ...," she said, her voice trailing off.
But then she heard a harpist playing "Amazing Grace" down the hall from Carl's hospital room. Vickie remembered the lyrics, "I was blind but now I see."
"I believe this was our sign... He's going to see again this side of heaven," she said.
Carl — who'll be the first patient treated in China for his diagnosis and the second adult to be treated for an optic nerve disorder ?leaves for Hangzhou City on Christmas night from Houston, Texas, with his brother-in-law, Paul Clevenger. After a 27-hour flight, they will check into Hangzhou Hospital on Dec. 28.
Vickie cannot go because she is undergoing chemotherapy to treat breast cancer.
Carl walks almost three miles a day and lifts weights to keep him self in top condition, he said.
He has a talking computer from Services for the Blind to conduct his business raising Pomeranian dogs and has learned some Braille. He also does housework and helps with the cooking, Vickie said.
Carl's health and physical condition are among reasons the hospital in China accepted him for treatment, Vicki said. And because he has had vision, his nerve receptors know how to receive all those messages. Patients who have never had vision ?like Austin — must develop those receptors and learn, she added.
After Carl returns home from China, he will require follow-up treatments five days a week for months, an added cost of $15,000-$20,000.
Gene Ridings, pastor of the Stevens family's church, Chadwick First Baptist, said Carl and Vickie have been an inspiration to the church and community.
"Their lives are certainly a testimony," he said. "We're praying for another miracle because just him sitting here is a miracle in itself.
"I believe God works through medicine and doctors and the talents he has given these people. We believe God's working through the people of Chadwick and other places and he's going to help Carl get his miracle through prayer."
Carl said he has often been asked how he kept his faith.
With tears in his eyes and his voice quivering, he said, "I can't imagine how anybody could go through what I've gone through — let alone what other people have — without believing in God."
Vickie said she was thankful for the children who have already been to China for the treatments. Stories about their success have been encouraging.
Ridings said, "If we'll give the Lord half a chance, he'll lift us up ... I'm looking forward to going deer hunting next season with Carl."
Carl is planning to watch his daughter graduate from Forsyth High School in May.

Hopes most fragile state

2007-11-17T08:41:00.000-08:00

Hope’s Most Fragile State

When is it wrong to provide hope?

I deal with hope everyday as do most of us on this planet. In addition to my own personal hopes I also deal with the hopes of others. I am in a way in the business of hope. It is part of my job to give hope and sadly some days it also my responsibility to take away hope. Daily and even sometimes hourly I find that I must somehow quantify and measure the elusive state of being; hope. I must ask myself; how much should I have for a person? How much should I allow another person to have? It is like trying to calculate an exact amount of air to into a measuring cup. Working within the cutting edge of medicine with what is literally the fastest advancing and arguably the most promising field of science in medical history I find I am the one often turn to in desperation. The clinical applications of Umbilical Cord derived Stem Cells is my specialty. Saying it is serious in nature would be of course a gross understatement. For many it translates into the quality of life in essence to live longer or to die. It is my daily task to answer questions about the worth of life, the functionality of life and the length of one’s life.

The desperate come to me daily with at least some small fraction of hope and for others endless amounts. The mere nature of my work allows hope even for those who may have been told to never have hope. They see my face on their television screens, many hear of my name on the internet seeking out information and literally looking for hope. Many find linked to my name a spark of hope kindles inside their pained hearts. I deal with many souls for whom I represent the last small fragment of hope. For some I can take this hope, cradle it softly and with a whisper encourage it to grow in slow measured amounts all the while safely shielding it in gently cupped hands. For others I can do nothing. It is for them that I must slowly open my hands allowing their hope to fall away. It sadly slides over and through my opening fingers, like a fine dust blown by the wind it disappears back into the blackness of desperation and loss. For me it is a strange mixture of science and faith. It is the business of medicine that bring with it a secondary challenge; the measuring of hope.

Be it however intangible hope itself is the right of each and every individual. To have it, to not or to what extent is an individual’s choice and one we all have the right to make. Hope as a verb indicates an action of wanting or expecting. As a noun it translates a confident desire, an intangible feeling that something is likely to happen. Hope is in essence a wish and or faith that something will happen or be possible. To have hope is our right as individuals. We also have the inherent right as an individual human being to make a choice as to in what we hope. One rather lesser known definition of hope is also trust or more accurately a feeling of trust. It is this trust that can bring us into the debate of who has the right to ask for a persons trust and to what degree is providing this elusive hope appropriate.

In medicine we often find it is this fine point that is the subject of much internal debate for caregivers and patients alike. When can we provide hope and is it humane to ever say there is no hope. We have all heard of medical marvels termed as miracles. Knowing such cases do exist one could argue that there is always hope to be found. Yet as human beings often do with something immeasurable by touch we attempt to qualify it by providing a mathematical scale. Hope is measured everyday in hospitals all over the world. We as practitioners of medicine subjectively measure and translate it for patients and their loved ones on an almost hourly basis. Lacking a better way we reach for numbers quantified in odds and percentages. Reaching back to any supportive data we can recall from lesson’s years before we quote the odds of successful outcomes but even this is still nothing more than an objective statement. We hide the hide the fact that it is really nothing more than an opinion by providing numbers and drawing on our education and personal experiences but still it is nothing more and nothing less than one person’s opinion. It is only that some of those attempting to quantify hope build their views on better foundations than others. Yet still is it right to make such statements? Could these statements mislead?

We know all to well that medical professionals are often wrong when they make statements about the percentage of hope one may have. They are human and thus despite their best intentions they can still be wrong and often are. We know and trust them and thus we accept what they say as true. We justify this in our minds using the knowledge that they have no reason to mislead us as they would gain nothing by doing so.

Now its time to flip the coin and begin the real debate; what of the private sector of medicine and the hope they might offer. Now the trust for which hope is based has just been turned upside down because those providing the hope now have something substantial to gain. This now brings with it the issue of the possible manipulation of a persons hope. I think we all can acknowledge that anyone manipulating a person's hope would be acting in an immoral and unethical manner. I personally think it is far too often the case that the private sector medical professionals prey upon those most in need. Some days it seems as no matter where one looks in the sky all that can be seen are the circling dark forms of vultures. With such a mass number and wide wing spans they seem to block the clarity of our sight. These birds of prey circle over those in pain and patiently wait as they calculate the time it will take for the emotional desperation to set in.

I also do not consider myself to be one of those birds although I do acknowledge that not everyone would agree. I have in fact refused to accept patients for treatment because I felt they did not have a realistic picture of what the outcome might be. It does happen that a person’s hope is simply not realistic and ethically it is my responsibility to check that. I actually have a question in one of the forms clients fill out asking "what is your hope in regards to this treatment". It is asked to ensure that thier hopes are indeed realistic. If the answer they give appears in anyway inconsistent with what is indeed realistic then I have not fully done my job and must then go back to them, working with them until I have confidence that they have realistic expectations.

Hope is a fragile thing and should always be handled with the utmost respect and consideration. The saddest days for me are those when I know I am a person's last chance for hope but still I must say no to treating them because I am aware of the reality that they will not benefit from the treatment I have to offer. It is a painful moment to remove an individual’s last ray of hope. It is not a responsibility I take lightly but rather one that weigh’s heavily in my heart. I still however will decline to treat a person if I do not feel there is a realistic possibility that they will benefit from the treatment. For me this is an emotional bit of business but none the less it is part of my job. I make every attempt to deal with this component with the greatest level of human sensitivity.
I in fact often ponder the concept and reality of hope as it is indeed such a huge portion of not only my job but also of my life. I would “hope” that my life experiences have enabled me to be aware of and respond to this issue with compassion and understanding.

Therapy offers Ray of Hope for Evans City Girl

2007-11-01T14:21:00.000-07:00

November 1, 2007

Therapy Offers Ray of Hope for Evans City Girl

By Karen Roebuck Lexi Smith says she likes being blind. Even so, the 8-year-old Evans City girl says she really wants to see her cat, Jesse, more than anything. She hopes an experimental stem cell transplant in China next summer will give her that chance. "Even if it wasn't experimental, I'd be nervous about going to a foreign country and getting a treatment," said Lexi's mother, Heather, 30, who is trying to raise $50,000 for the treatments and trip. "I can't see myself not trying this. I think we'd be forever asking ourselves, 'What if we had tried this?' " Although umbilical stem cells are used in this country to treat more than 50 diseases, they are not used to treat Lexi's condition, optic nerve hypoplasia, an underdevelopment of optic nerves. Several months ago, Beike Biotechnology, based in Shenzhen, China, began treating children with the condition with stem cell transplants, and intravenous infusions of blood cord serum and a chemical that stimulates nerve growth. The company recommends hyperbaric oxygen treatments for three months after patients return home. A 10-month-old Kentucky boy is in China now, the fourth optic nerve hypoplasia patient to receive the treatment. Some American experts, however, express doubts about the therapy. The treatments likely will not work but should not be dangerous, said Albert Donnenberg, director of UPMC's Hematopoietic Stem Cell Laboratory and professor of medicine at the University of Pittsburgh School of Medicine. Donnenberg, who read the company's literature, sees three obstacles: The stem cells must get to the right place in the body, turn into the right type of cells and not be rejected by the immune system, he said. "They're giving such few cells, you wouldn't know (if they were rejected)," Donnenberg said. Dr. Richard Hertle, chief of pediatric ophthalmology at Children's Hospital of Pittsburgh, said he has seen nothing about Beike's work in medical journals. "I've looked at this, and I just don't see enough evidence to send my patients over there," said Hertle, who has taught and worked in China. "If this was really that spectacular, this would have gotten pushed through and been the lead article in the New England Journal of Medicine or the journal Nature." Hertle said the younger a child receives treatment, the better it tends to work. Treatments in the United States help blind children with optic nerve hypoplasia and other conditions gain some vision, although not by restoring the nerve, as Beike is claiming to do, he said. Lexi, who has limited light perception, turns 9 on Nov. 25. "I think, at this point, (Lexi) has an excellent chance of some vision recovery, given what we've seen with the other four children, although there are no guarantees," said Kirshner Ross-Vaden, Beike's Chicago-based vice president of foreign patient relations. Lexi is in the gifted program at Evans City Elementary School, part of the Seneca Valley School District. An aide translates her assignments to and from Braille. At 1 month old, she was diagnosed with the absence of the septum pellucidum, a thin membrane in the middle of the brain often linked to hormonal problems, which Lexi has not had, and optic nerve hypoplasia. "I was always told there was nothing that could be done," Smith said. She scoured the Internet in vain until Lexi's dad, Jeff Moraski, saw a news report about a blind man being treated with stem cells. Smith eventually found the story of Rylea Barlett, 5, of Webb City, Mo., who has optic nerve hypoplasia. After reading on Beike's Web site about its success treating brain injuries and other neurological conditions, Rylea's mother, Dawn Barlett, 30, e-mailed the company and asked if it would be willing to try the procedure on her daughter. Rylea, who had no light perception, began treatments July 4. She can distinguish shapes and some details, such as whether her mother is wearing glasses or lipstick, up to six feet away and has 2-400 vision, according to her mother. "Within two months, she grew 1 1/2 inches, where she hadn't grown in two years," her mother said. Beike formed two years ago to treat patients with neurological conditions with umbilical stem cell transplants and the company recruits American and foreign patients. The transplants are done at 11 facilities in China, two of which accept foreign patients, Ross-Vaden said. As of October 2006, Beike said it performed stem cell transplants on more than 2,000 patients with neurological problems, including Alzheimer's disease, brain injury, cerebral palsy and multiple sclerosis. "Stem cells are not a cure, and I think that has to be stressed. These cells are a treatment for a lot of disorders," Ross-Vaden said, "but they're not going to completely resolve or reverse something." When Smith read Rylea's story about three weeks ago, she said, "I just sat at the computer and I bawled. I was shaking, crying. There was hope." Her family immediately started raising money to take Lexi to China in June. "I think it will be exciting -- getting the treatment and being in the (hyperbaric) oxygen tent," Lexi said. "I'm excited about that, because I like tents, and it's like a tent." And she longs to see her cat, Jesse. "I'm a cat lover," Lexi said. "I have to see what cats look like."

Fight For Sight: Family in Hopes of a Medical Miracle

2007-10-28T14:32:00.000-07:00

October 28, 2007
Fight for Sight: Family in Hopes of a Medical Miracle

Standard DemocratEAST PRAIRIE — Every night before she falls asleep, Paige Archie dreams about the time her son will see her for the first time.“I wonder what he’ll do when he sees me,” she said. “The thought goes through my head all the time.”Her son Daegan, 4, was born blind. Eye doctors say his optic nerves didn’t fully develop. “They don’t know what causes it,” Archie said.Archie said she had a normal pregnancy, although she had some difficulty with labor. Daegan weighed 8 pounds, 13 ounces when he was born and was “just as normal as could be.”But once he was about 3 months old, family members began to notice things they thought were odd. “He wouldn’t reach for a rattle, he didn’t care for looking at anybody,” Archie said. And his eyes would “jump back and forth.” It was her grandfather, Richard Sutton, who finally convinced the Archies to take Daegan to the doctor. “I kept watching and he didn’t have the movement,” Sutton said. “He wouldn’t follow you around or anything.”Doctors told the Archies the only way to make Daegan see is to transplant or regenerate nerves — something they weren’t able to do.But now the Archies have hope. A couple of months ago, Paige Archie saw a newspaper article about a 6-year-old from Webb City who was also born blind. However, the girl had developed 20/400 vision after receiving an umbilical “corded-blood” stem-cell treatment in China.“I thought ‘that’s hope for Daegan right there,’” Archie said.Soon after she saw the article, Archie found a Web site and contact information from the other family and spoke with that girl’s mother.“I was so excited when I got off the phone,” Archie said. “It didn’t feel real.” They talked to Daegan’s doctors, who called him “a perfect candidate” for the injections. The only problem is that the process is expensive — and it isn’t covered by insurance, since it is considered research.Between the cost of the injections, travel, expenses the family will incur the 30 days they are in China and the therapy Daegan will require once he returns home, the total tab will be about $60,000.So now, with help from the community, the family is working to raise that money. Archie hopes to leave for China near the beginning of June.“Everybody’s been pulling for this child,” said Loretta Peters, Daegan’s great- grandmother. There have been yard sales, T-shirt sales and road blocks, and about $5,800 has been raised in just three weeks. Organizations are planning other events, such as a fish fry, and a golf tournament is in the works for next spring.Richard and Judy Sutton, Daegan's great-grandparents, said they’ve been overwhelmed by the response.“It’s a surprise that in that length of time we’ve been able to raise that much,” Judy Sutton said.Richard Sutton said he has had several friends say they plan to donate when they see just how much is needed. “It would mean the world to me if he could just see enough to just walk around,” he said.People are being proactive with the cause. “We’ve even had businesses call and say ‘bring a jar’ for donations,” Peters said.Even Daegan’s brother Jase, 3, has a jar — dubbed his “China Money” — where he collects coins. “We didn’t want him to feel left out,” Archie said. And for those who can’t donate, support and prayers are just as appreciated. “You don’t have to donate a dollar,” Archie said. “We need prayers, too.”She was afraid the town may not be supportive since stem cells can be a sensitive issue. But, Archie said, she hasn’t faced any criticism.She and other family members have made it clear the injections don’t deal with aborted fetuses, but umbilical cords — in fact, Jase’s umbilical cord was banked in case it can be used. They also give out the Web site, www.stemcellschina.com, so people can research it themselves.“We’re just looking forward to the day we can send him to China,” said his grandmother, June Maxey.No one knows what the injections will mean for Daegan. “They don’t like to give odds,” Archie said.But she’s hoping for something, no matter how small. “It might not be perfect, but if he could see my face, that’s all that matters,” Archie said. “If this can give him a chance, we need to give him that chance,” Peters agreed.Even so, the family is making plans to help better Daegan’s future if the injections don’t give enough improvement.“We’re planning to move to St. Louis so he can go to the Missouri School for the Blind,” Archie said.While it will provide Daegan with an education, he’ll also learn important life skills. “They’ll teach him how to be independent, too,” she said.But family members hope the injections give Daegan enough vision he doesn’t have to go there, and perhaps be home schooled instead.“In the back of our minds, we hope for more, like for him to go to regular school,” Maxey said. “We’re all really close and we don’t want to see him move away.”

Benifit to Help Toddler's Recovery

2007-10-26T14:30:00.000-07:00

October 26, 2007
Benefit to Help Fund Toddler's Recovery

Sun-herald.comPORT CHARLOTTE -- Cameron Petersen's sight continues to improve, but his family still needs help.The Loyal Order Moose Lodge 2121 and Fraternal Order of Eagles will hold a charity fundraiser Saturday to benefit Cameron. The event will take place from 11 a.m. to 2 p.m. at the Moose Lodge on Loveland Boulevard.The 21-month-old Port Charlotte toddler suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done.The family began to research other options and found Stem Cells China, a research facility that has infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China in August as part of a case study to treat his blindness with stem cells. The procedure transplanted harvested umbilical-cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- tasks he couldn't do before. Now, doctors say he can see to his knees.The family needs assistance with medical expenses, including a hyperbaric oxygen decompression unit to help Cameron's vision improve.Cameron's grandmother, Carol Petersen, will also hold an event at Gilchrist Park Nov. 3 to raise awareness about umbilical stem-cell research. Petersen has been collecting signatures since September to start a government-funded cord blood bank.For more information about Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America.

Where is the Miracle Here?

2007-10-24T10:30:00.000-07:00

Had you asked me even just one year ago if I ever thought my name would end up in The Enquirer linked with the word “miracle” I would of course said “certainly not”. In fact I am not a reader of this type of thing as I do not follow such matters in life as one would typically find in such a news paper. Thus upon receiving a phone call several weeks ago from one of my mom’s telling me that she had been contacted by a reporter claiming to be from the National Enquirer came as a bit of a shock to us both. Her daughter has been receiving a lot of press in recent months as her story has spread across the globe, but little Miss Rylea at the age of 6 is by no means a Hollywood star. She is however an example of one of life’s miracles but the real question should perhaps be what is the true miracle taking place here?
Several months ago her mother sent in a very simple question through our web site general’s general “contact us” section. At the time I do not think Dawn really expected any sort of reply but perhaps a standard “no”. Her question was so simple, honest and earnest. She only was wanting to know if I could help her 5 year old daughter who had been totally blind since birth to see. She has since told me that she has been asking that very same question of numerous medical professionals since the moment she found out her newborn baby girl was blind. No one had ever given her even a ray of hopeful light over the years but Dawn just kept asking as she is not one to accept fate as being predetermined. Then she stumbled upon me and I upon her. I understood her instantly as only a mother placed in a similar situation could. No medical professional, clinician or scientist could have known immediately what I knew about this mother and her child unless they also had been placed to walk in such shoes.
She sent her question off to a company in China, half way across the world only to have it sent back to a woman that lived only a day’s drive away. After several email and phone conversations with Dawn to determine exactly what her child’s status was I set about my work. My task was a simple one on its face; could the type of stem cells used by my company be used to treat an underdeveloped optic nerve. It did not take me long to figure out that it had never before been done, there were no studies, no research not even one single medical paper on the subject. All I found was a whole lot of nothing. That however did not stop my mind from turning over the possibilities.
All it meant for me was that I had to make all the connections in my own mind starting from a blank page. Nothing in my research gave any indication that Rylea’s situation of having been diagnosised with Optic Nerve Hypoplasia could be treated. Everything I read said that it could not be treated but knowing what I knew about stem cells told me that what I was reading was in fact so out of date with today’s technology that it was simply wrong. The more I thought about it the more absurd the notion of ONH being untreatable became. Following a path of logical progression in my naturally analytical mind I became convinced that in fact it could be done and who better to step forward and do it than I. Why not me? Who would do it if I did not? Would it ever be done if I did not? Should I just let this go on its predetermined pathway or should I step in and change this child’s fate? Who is that decides our fates anyway if not us? Perhaps in fact I was Rylea’s fate and she mine. Now her fate and life has been forever altered. She and I will be linked together in this time and place forever henceforth.
It is not so much that the restoration of Rylea’s vision is the miracle but rather it was the connection of her and I that was the miracle. For me to have come to this place in life I would not have guessed it would be so even just one year ago yet here I am. I was guided into Rylea’s life and she into mine that is the miracle not told by the Enquirer’s reporter. It is the story behind the many headlines that have taken both Rylea and I out of our space of privacy and thrust us into such places as the National Enquirer. I wonder what she will think 20 years from now about her moment of fame.
What I think about it all is that behind the headlines is a story that no one has told.

It is the story of why our paths crossed, how it was that I ended up in a place by which I could help this child and who it was that put me here. There is one tiny soul responsible for all of this and had it not been for his life and yes even his death Rylea would still be blind. It is not Rylea who is the miracle, it is not the doctors who worked with her that are the miracle, and it is not even me who brought it all together who is the miracle. The true miracle here is a life that existed before and the soul that continues on with such beauty and perfection that it can only be seen as angelic. It is this one that wove the movements of fate and time together with such a simple complexity that it becomes almost unseen. It is he who locked together the bits and pieces of our lost lives to create the whole of a true miracle. It is for whom I shall forever love. Such beauty, such perfection is he. Clearly the miracle is he my Justin Lee.

Who To Trust?

2007-10-17T03:35:00.000-07:00

Do you ever wonder about what goes on within the world of stem cells? For the vast majority it is a strange and confusing area of science that seems impossible to navigate. You can surf the Internet, watch the programs on TV, some folks will pick up a book on the subject but for most they never get past articles written up in their local newspapers.

Books on the subject are actually few; they are typically not geared for the lay person and often very expensive. Written articles in the newspapers tend to be misleading and are often filled with inaccuracies not to mention inflammatory phrases designed to catch and keep the readers attention. Television can peak one's interest with powerful sound bites and fascinating tales but typically do not have enough content to educate. That leaves us with the Internet.

These days' stories, web sites, articles and blogs of varied nature are spread throughout those invisible connections. You can find a host of varied information about stem cells on the Internet. The problem is without some basic knowledge of both science and medicine how are you to understand what you are reading. For most there is no way to separate the facts from the fiction, the good and true from the misleading and often disreputable. What is a person to do? Who do they trust to give them honest information in a world filled with scam artists who would take advantage of the seekers at every turn?

Well here I am and this is what I do. I am the person often trusted by parents, the injured, the sick, the families and friends of those in need. They come to me every single day with hope and fear. Their pleas come across my lap top screen on an hourly basis. All of them vulnerable with pain, loss, desperation and hope. Yet how are they to know who I really am as after all to most I am just a name with an email address that comes through the darkened space of an Internet connection. If I were in their shoes would I trust me?

Well the honest answer is vague, it is only a "perhaps" I suppose. For those in need they must trust someone in order to find help but deciding who is the most difficult part of navigating the stem cell world. I work with literally hundreds of patients, parents, family members and loved one's all in need and each one searching.

It is not surprising that the vast majority of my clients come to me by personal referrals. After three going on four years working with families and patients I have gained a reputation. My name, an unusual and not so forgettable one is spread all over the Internet these days. It can be found in chat groups, Internet support groups, blogs and news reports. Yet still despite that I often ponder how hard it must be for some to trust me. I am after all nothing more than a stranger to them.

An experience with a recent client of mine has left me turning this subject over and over in my head. She is a mother of three the newest child being less than two weeks old when she first contacted me. For her there was no personal referral just an Internet site. She came to me by surfing the net in exhausted desperation looking for help as all are when they finally make their way to me. Her tiny newborn son had just come home from the hospital after living through a ruptured umbilical cord during birth resulting in the loss of over 50% of his blood volume. This event left the newborn struggling for life and labeled with a most uncertain outcome.

How does a mother consumed with ripping pain and endless desperation find a safe, viable treatment for her 2 week old infant son who has struggled for life only to be left with a grave diagnosis and a certain brain injury. Late at night, numb with agony she surfs the net. Moving the mouse, repetitive clicks and several key strokes later she has entered into the strange world of stem cells. One more movement sliding the cursor across the computer screen and just one more quick click she finds herself at a website. http://www.stemcellschina.com/ . After pouring through the many sections, countless articles, stories and patient blogs she follows the path to "contact us". She types in a brief note asking for help.

In less than 24 hours she is conversing with me. Numerous emails go back and forth between her and I, multiple phone calls are made across the globe and in just a few days time she is buying tickets, obtaining emergency passports and getting Visa's all done to take her infant to China for stem cell treatment. Within just 8 days of that simple click to "contact us" she and her husband are boarding a plane with their now three week old son.

How did this happen? Where was the evolution of trust? How did she know I was the one? For most I think it is a sense. That untouchable feeling we have inside. I have asked her why she placed her faith in me and she simply states "I just knew I was lead to you".

I suppose in the end for most trusting someone over the Internet to help you travel half way around the world to receive stem cells is nothing more and nothing less than an inherent faith and endless hope. That said I still wonder if there isn't a better way. Late at night while lying in my bed waiting for sleep to overcome me I frequently find myself reflecting in the quiet darkness of my clients. Often I am wondering if my clients are doing the same of me. Do they wonder who I am and what I am like? I think they must. It is thus that after months of contemplation I have finally begun this blog. It is a look into my life, my work and my heart. Please enjoy...

The photo above is little Liam. It was taken in the NICU of Xiashan Hospital in Hang Zhou, China. Here at just the tender age of one month he was the youngest child to ever receive a stem cell transfusion. The cells were given via an intravenous transfusion. The line was placed into one of his scalp veins as they are larger, easier to access, safer and less likely to infiltrate during the infusion. The procedure was done in the Neonatal Intensive Care Unit due to his young age and to allow for extremely careful and watchful monitoring. You can see in the tiny bed with him is an infusion machine used to carefully, slowly and at a very steady rate infuse the amber colored solution of cells and growth factors into his tiny body.

The photo was taken by one of the registered nurses working in the NICU with Liam that day of August, 2007.

Liam's Mother Liz talks about her evolution of trust.

July 27, 2007 was one of the best days of my life. It was also the worst day of my life. It was the day my son Liam Michael was born. Such a paradox. My husband Steve and I sat in the hospital room listening to the fetal monitor, taking pictures and laughing…….we were going to have a baby. Our 3rd and most likely last child was on its way into the world. We didn’t know the sex but I was convinced it was a boy…mothers intuition. My pregnancy had been fairly uneventful except for a very strong, inexplicable feeling throughout that something was “just not right”. I was so convinced that I had even expressed my concern to my OBGYN a few weeks before my due date. My specific concern….the umbilical cord. I dismissed my fears as hormonally induced insanity. Little did I know that my fears were valid….mothers intuition. Due to an undiagnosed condition called Vasa Previa, Liam lost over 50% of his blood when my water broke. It took more than 13 minutes to revive him. His apgar was 0 0 0 2 3. He received 2 blood transfusions and began having seizures. The outlook was grim. This couldn’t be happening.

After a week in the hospital, Liam came home to us. With a calendar full of appointments and evaluations, all the doctors could tell us was, “you just have to wait and hope for the best”. That was just not good enough for me. Over the next few weeks, it became apparent that Liam was not a typical newborn. Surely there must be something that I could do! I had to help my baby.

I began my search, voraciously reading every article and bit of information I could about brain injury. I stumbled upon some articles on the successful use of stem cells in treating brain injury. Surfing the internet late into the night I began learning about various places throughout the world where stem cell therapy was available. My search eventually led me to a website about a program in China. I shot off an e-mail requesting more information fully knowing I was never going to take a newborn baby around the world to China for stem cell therapy, there were places much closer I could go, but I wanted as much information as I could get my hands on.

The reply came quickly. It was from Kirshner Ross-Vaden. She explained that she knew how I felt, and that she too was once where I was. Finally, someone who knew how I was feeling. I called her the next day. We talked about many things including the Beike stem cell program in China. I told her that 3 weeks in China with a newborn baby was just not feasible for me or my family. The very thought of it scared me to death. My research and discussions with Kirshner made me feel confident that umbilical stem cells were safe. But to go to China to do this? I was 3 weeks post partum after an emergency C Section, my newborn son was fragile and brain injured, I had 2 other children at home. I couldn’t possibly go to China for an experimental treatment that offered no guarantees. Perhaps it was Kirshners contagious enthusiasm and belief in the therapy, or the bond we shared because she was a parent of a brain injured child or probably a compilation of many things, but I felt I could trust her. She told me she would give anything to have had the opportunity to take her precious son Justin for stem cell therapy at such an early age. I believed her. She told me “you can do this”. Such a simple phrase but very empowering to me at the time. She truly cared. My gut told me this was the right thing to do….I had ignored my intuition once, and I was not going to do it again. My husband and I decided to take Liam to China for Umbilical Stem Cell Treatment. It was the hardest decision I have ever made.

Once we reached the hospital my fears slowly began to melt away with each passing day. The staff was very caring and were very careful with Liam. He received a total of 4 IV stem cell infusions over a period of 3 weeks.

Liam is now almost 3 months old. He is doing very well. People are amazed at his progress. I am extremely grateful that I came to know Kirshner. If someone else was on the other end of that e-mail, I don’t think I would have made the trip. I do not believe in coincidences. I was led to Kirshner for a reason. She has been an invaluable resource to me as I have been trying to navigate this lonely road of having a brain injured child. I can only imagine the pain of losing a child, and I admire Kirshner for taking her personal pain and loss and turning it into something positive for so many desperate families. I can only say thank you to her and her angel Justin. For without them both, I would probably be still surfing the web paralyzed with pain, trying to help my son.

The future is far from certain for Liam and because of his age many will argue that there is no way for me to know if the stem cells really helped them. I absolutely know they did. How? Mother’s intuition……..

Thank you Kirshner.

In the beginning

2007-10-13T18:02:00.000-07:00

In the beginning

It was he who choose me.

His was my tiny baby Lee.

He was all not just part of me.

I now live all within and for he.

His spirit spins so fast within me.

With a soul now far beyond thee.

He came with injury yet perfect to me.

Jay Lee soul perfection to me and to thee.

Auction Helps Family with Trip and Treatment Costs

2007-10-07T14:35:00.000-07:00

Auction Helps Family With Trip and Treatment Costs

WBKOA Bowling Green family is preparing for a trip to China in the next week in hopes that treatment will help their son regain his sight.Ten-month-old Jackson Blackford was born with optic nerve hypoplasia.The condition left him legally blind.Jackson is one of five children worldwide selected for a research study using umbilical cord stem cells.An auction was held on Oct. 6 at American Legion Post 23 in Bowling Green to help raise money for Jackson's trip to China and treatment, which cost $60,000."They've done three of the five children so far. Jackson will be the fourth one and so far all three children have gained some vision from this treatment so we're real hopeful for it," assured Jackson's mother, Rachael Stayer.Jackson and his parents leave on Oct. 15 to go to China.

Community Plans Fundraisers to Help BG Infant

2007-10-01T14:38:00.000-07:00

Community Plans Fund Raisers to Help BG Infant's Family Pay Health Expenses

BG Daily NewsVarious organizations will have fundraisers for Bowling Green infant Jackson Blackford, who will soon travel to China to participate in a case study to see if his sight can be restored.Jackson has optic nerve hypoplasia, an underdevelopment of the optic nerve. The study will involve using a transplant of healthy donated umbilical cord stem cells at Beike Bay Stem Cells China. The trip will cost $60,000 for Jackson and his parents, Rachel Stayer and Tommy Blackford - including travel costs, living expenses, treatment and rehabilitation, Stayer said.Fundraisers will include the following:Greenwood High School and Choir will have a special benefit concert at 6 p.m. Tuesday at First Baptist Church. Tickets are $8 for adults and $4 for ages 12 and under.An auction of donated items from various individuals and businesses, including Eagle Industries, Ashley, Steamboat Salvage, Haverty’s, will take place from 1 p.m. to 5 p.m. Saturday at American Legion Post 23 at 208 Dishman Lane.A special showing of the movie “Ray” will take place at 7 p.m. Oct. 8 at Western Kentucky University’s Mass Media Technology Hall. Dr. Ron Milliman will host the event and donations will be taken for Jackson.Donations can be made to the Jackson T. Blackford Donation Fund at any branch of U.S. Bank.

No More Darkness

2007-09-28T14:47:00.000-07:00

Sun-herald.comBy Jason WitzStem-cell treatments already producing changes in Port Charlotte toddler, who is legally blindCameron Petersen can't sit still.The 19-month-old Port Charlotte toddler crawls toward objects with a new sense of curiosity. His legal blindness seems to be fading with each day in China, as he explores the foreign surroundings of the room."My son says he's like a little monkey," said Cameron's grandmother, Carol Petersen, who has been communicating with the family by phone.Earlier this month, Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, as part of a case study to treat his blindness with stem cells.Cameron was diagnosed with optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness. Doctors told Cameron's parents nothing could be done.But the family never gave up hope.They found Stem Cells China, a research facility which has successfully infused stem cells into patients suffering from numerous disabilities and diseases.Family members raised about $20,000 this summer to help fund the trip to China and for the treatment.The procedure, which isn't available in America, transplanted harvested umbilical cord stem cells into Cameron.Stem cells can transform into specialized cells with specific functions, such as repair of Cameron's optic nerves.Treatment consisted of four total stem-cell infusions to Cameron's arm and the lumbar region of his spine. It didn't take long to notice a change.Carol Petersen said Cameron's energy level increased following his first treatment on Aug. 10. He also seemed healthier.Petersen said Cameron used to have a high temperature every other day.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. In the past, Cameron would feel objects such as his toys by putting them against his lips and face."He's exploring everything," Petersen said. "I am just so overjoyed."Cameron is one of five children to undergo stem-cell treatment for optic nerve hypoplasia. Among those treated by Stem Cells China was a child from Missouri this summer, along with a girl from Romania. Both have shown incredible progress with vision.Cameron will return early Wednesday morning with his parents.Peterson said she hopes to raise awareness about stem-cell research, since it remains a controversial subject in the United States."If it's in our power to do this to help people, why can't we?" she said.

Braille Institute VP: Cameron May be a Door Opener for the Future

2007-09-28T14:44:00.000-07:00

Sun-herald.comBy Dawn KrebsThe news of an 18-month-old boy slowly regaining his eyesight has rippled across Southwest Florida."That makes four children that we know of that have received this treatment who can see now," stated Chuck Johnson, vice president of The Braille Institute of Florida. The institute works in Southwest Florida to increase Braille literacy and encourage children with blindness and other learning disabilities to express their talents. "If Cameron is coming through that same exchange, he may be a door opener for the future."The legally blind Port Charlotte toddler was diagnosed with optic nerve hypoplasia, or a lack of development of the optic nerve, and traveled to China for stem-cell treatment the beginning of August."Hypoplasia comes from damage to the optic nerve," Johnson said. "It's not strong enough to carry the light. The only thing that can help your sight is to undergo this type of treatment. His optic nerve was asleep; now it's getting a new shock. This new shock is the stem cells that are from the umbilical cord."According to Eric Stockley, of the Charlotte County Health Department, Cameron received a series of five injections of umbilical cord stem cells directly through his spine into the fluid that surrounds the brain. These are cells harvested from umbilical cord blood and not the embryonic cells that are at the center of controversy right now.Each injection delivers more than 10 million stem cells in combination with additional neuron growth factor cells. These cells guide the stem cells to the damaged nerve cells, which in Cameron's case is the optic nerve. Once the stem cells have located the damaged nerve they begin to rejuvenate and replace and repair the damage.After he returns to the United States, Cameron will continue to take treatments for another year or more. Also, he will have to undergo three months of intensive therapy to stimulate his sight. Also, for 12 months, Cameron must spend some time every day, five days a week, in a hyperbaric oxygen decompression unit. This is similar to what divers with the bends must undergo, but for Cameron, this therapy will encourage armature stem-cell growth.What will this small success mean for future research?"He (Cameron) is coming from scratch," Johnson said. "If he's getting stronger, it's because of these treatments. It's exciting news for us. We have a winning key on our hands, and the government is going to hear about it."

Helping Other Children See

2007-09-25T14:40:00.000-07:00

Sun-heraldBy Jason Witz Grandmother of Cameron Petersen wants to get government-funded umbilical cord blood bank to serve community Carol Petersen wants to help other children see.But it's going to take a lot of legwork and signatures.The Port Charlotte resident hopes to raise awareness about umbilical cord stem-cell research using her grandson's story of sight.Cameron Petersen, a 20-month toddler who is legally blind, has made significant progress since undergoing a stem-cell infusion in China last month.Now, the goal is to secure government funding to open a public umbilical cord blood bank in Charlotte County, providing other children with hope. The petition has already received hundreds of signatures."I'm trying to help all the other Cameron Petersens," his grandmother said.Cameron suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done. The family began to research other options and found Stem Cells China, a research facility which has successfully infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, last month as part of a case study to treat his blindness with stem cells. These cells can develop into specialized cells and even repair tissue. The procedure, which isn't available in the United States, transplanted harvested umbilical cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. Now, doctors say he can see about 1 1/2 feet, or to his knees.Since the treatment, Petersen said many families have contacted her about getting their children help.Petersen said the United States has several cord blood bank facilities, but most are privately operated and expensive."People shouldn't have to go to China for treatment," she said.The public, medical community and state and local government agencies are invited to learn about umbilical stem-cell research Nov. 3 at Gilchrist Park.The event will feature the success stories of Cameron and a girl from Missouri who can now see. Kirshner Ross-Vaden, one of the leading experts on umbilical stem-cell treatments, will discuss their stories.Petersen said she hopes to raise awareness about the petition to start a government-funded cord blood bank."If enough people want it in Charlotte County, we will make it happen," she said. "I'm not going to stop until I get it."For more information on Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America. The money will help fund a hyperbaric oxygen chamber needed for Cameron's continued recovery.

Umbilical Cord Stem Cells Offer Hope for 10 year old Austin

2007-09-21T14:27:00.000-07:00

September 21, 07
Umbilical Cord Stem Cells Offer Hope for 10-year-old Austin

Bolivar Herald - Free PressBy Becky Baker May see for first time in short lifeA young Bolivar boy hopes to be able to distinguish light from dark as well as make out faces, something he has never been able to do since birth. Austin Anderson, 10, has born with optic nerve hypoplasia, which is a congenital disorder that is caused by the underdevelopment of the optic nerve. He also suffers from septo-optic dysplasia, which is another birth defect that is related to growth hormone deficiency, and he is mildly autistic.Yet, Austin is a happy little boy, according to his mom, Kim Lightwine May. At age 10, though, he only weighs 57 pounds and is at the 10th percentile on the height and
weight chart most pediatricians use to chart growth for kids.He has attended Missouri School for the Blind in St. Louis since 2004. "He has learned a lot of things that help to prepare him for the best quality of life he can have," May
said. Before attending MSB, he attended Bolivar Center for the Developmentally Disabled for two years."Austin loves music, water and to sit in a lawn chair while others are busy doing their things," May said. "He also loves to lay on Mimi's trampoline."New hope for AustinAfter 10 years of never being able to see, there may be hope for Austin to gain some sort of eyesight. Recent stem-cell transplants from umbilical cords in China have been giving hope to families similar to his. These stem cells are taken directly from umbilical cords after babies are born, not those produced in laboratories or taken from embryos or fetuses across the world.The Joplin Globe featured a story on Sept. 2, the exact day Rylea Barlett of Webb City was born six years ago. She was born blind with the same birth defect as Austin. She is now experiencing success with the stem cell transplants she received in July in China. She can now make out the "big E" at the top of the eye chart and can point out the three points, make out the faces of her mother, father, big brother and little sister."I can't wait for the day when Austin can finally see his mama's face," May said.The transplant procedures consist of one IV transplant and three spinal infusions, costing around $25,000 for the four transplants. Because the FDA has not approved the procedure, it is not available in the United States. But doctors at the Beike Clinic in Hangzhou, China, offered this experimental treatment to the Barlett family. Rylea was the first person with the same diagnosis as Austin's to have this procedure, and she has seen results within weeks of treatment, while it was first believed to take three to six months to see any improvements.Not only should these transplants help with Austin's vision and his growth deficiency but also his autism and very likely his developmental delays.Ever since May found out about Rylea's story from a friend who recently saw it in a local daily newspaper, she has been in touch with her mother on almost a daily basis, and they were able to meet in Springfield this past weekend. It is her hope to take Rylea back to China in March 2008 for another round of transplants for Rylea, and May hopes to be ready to take her son at the same time.For more information on the procedures, visit Rylea's Web site at NoMoreDarkness.com or StemCellsChina.com. You may also visit Austin's Web page at HopeForAustin.com. There is a fund set up for Austin's transplants and trip to China at US Bank, attn. Robin Sawyer, in Bolivar under his name, the Hope For Austin Fund or his mom's name.

In our view: Hope Where None Existed

2007-09-05T14:42:00.000-07:00

Joplin GlobleNeed evidence that stem-cell research can produce miraculous results? Six-year-old Rylea Barlett, of Webb City, was born blind, with no hope of ever seeing. But her mother refused to give up, taking her to various specialists in the United States before finally trying stem-cell transplants from umbilical cords at a hospital in Hangzhou, China. After three spinal stem-cell transplants and two IV transplants, Rylea reacts to light, has seen the faces of her mother, brother and sister, and was able to detect a big “E” on the chart across the room in the office of Dr. Larry Brothers, her Joplin optometrist.Her vision is only 20/400. But that may be only the beginning. Rylea is supposed to return to Hangzhou for further stem-cell transplants in March. Although she may never see perfectly, as her mother, Dawn Barlett, said: “You continue to build on what you have gained.”Rylea’s experience offers hope to others who have been blind from birth or perhaps even were blinded in an accident or by a disease. The use of stem cells from umbilical cords has generated new optical nerve cells that allow Rylea to see.A man in Sikeston had stem-cell transplants in the Chinese hospital with the hope of repairing a spinal-cord injury that left him paralyzed from the waist down. He still can’t walk, but he is able to move his toes. No one can guarantee that stem-cell transplants, including the somatic cell nuclear transplants approved for research in Missouri by voters last year, will come up with cures or even ameliorate the ravages of debilitating disease or injury. But the research offers hope where little or none exists. Opponents of stem-cell research argue that the somatic cell nuclear transfer procedure amounts to cloning, despite the language in the amendment written into Missouri’s Constitution last year prohibiting human procreation by cloning, and want to put a stop to it through a grass-roots initiative petition campaign.The research in Missouri already is being hampered by an unstable climate being created by those who are continuing the efforts to overturn or thwart the purpose of the constitutional amendment. Plans for expanding this vital research reportedly have slowed. That is a shame. We don’t fault those who follow their consciences, but we think that they are caught in between rapid advances in medical science that have outpaced medical ethics and public understanding. Rylea is dramatic proof that research into the use of stem cells from the umbilical cord can work. That same hope exists for sufferers of other life-threatening, quality-of-life-dampening injuries and diseases. Their best hope is somatic cell nuclear transfer research here in Missouri, not in a faraway land or city like Hangzhou, China.

Stem-cell Transplants Provide Hope for Family of Blind Girl

2007-09-03T14:43:00.000-07:00

Joplin Globe“This is totally uncharted territory. We don’t know what to expect. We don’t know what the end result will be and whether she will have some functional vision. But two months ago she had nothing, and now she can see light. That’s an incredible journey for one small person. It’s a miracle.”The diagnosisAfter Rylea was born, she had a few medical issues, including a blood-sugar problem, but it did not appear to be serious.“We did not know anything was wrong until she was 4 months old,” Barlett said. “It was in January of 2002. A doctor noticed she wasn’t tracking with her eyes. He told us to make an appointment with a pediatric opthamologist.“We thought she had a lazy eye. We expected the problem to be minimal. The doctor did an exam. A few minutes later, we are told she is blind and there is nothing we can do to fix it.” Stunned by the news, she sought second, third and fourth opinions.“It was the same diagnosis everywhere we went,” she said. “That’s when we took on this whole new world. We were still hopeful, though this was our worst experience with anything bad. We had a perfect baby girl. She was our princess, and something was wrong that no one could fix.”They made trips to Children’s Mercy Hospital in Kansas City and other places in search of hope.“There were a lot of learning experiences,” Barlett said. “We never gave up. Her being blind was never OK.”Eventually, Rylea had seen all of the eye specialists her family could find. Brothers continued to see Rylea to check on the health of her eyes, but there was nothing he could do for her.Brothers and the girl’s pediatrician, Dr. Fred Wheeler, of Joplin, were two of the only people to hold out hope for Rylea “when no one else did,” Barlett said. “I will never forget what Dr. Wheeler said to me when I talked to him about the stem-cell transplants. He said, ‘If there is an answer, this is it.’”After encountering one wall after another, Barlett became frustrated, but she continued her search on the Internet for promising treatments outside the United States.“I looked for help in India, Thailand and throughout the world — places where they don’t have the FDA (U.S. Food and Drug Administration) to hold back research,” she said. “I found this place in China that does umbilical stem-cell transplants.”‘I wanted to know everything’She sent a brief description of her daughter’s condition to the research program in China.“I knew there was no cure, but at least they were doing research,” Barlett said. “I felt there was the possibility of potential improvement for her. I got a response back from a lady in the United States. She was their contact in this country.“In her letter, she said they had never treated anyone for this condition, but felt there was a significant chance for improvement. For a week to two weeks, I prayed about it. I am not one for false hope. I did not want anything like that.”She put together three pages of questions for her contact.“I went down the list of possible side effects,” she said. “Stem cells can cause tumors. I was concerned about that. But, umbilical-cord stem cells have no antigen markers like embryonic stem cells. Umbilical-cord stem cells, because of that, can help develop brain and nerve cells — gray matter — but not other things. I thought, ‘Maybe they can develop optic-nerve cells.’“I wanted to know how they did it. Did it involve surgery? I was told she would have intravenous injections and spinal infusions. After weighing the pros and cons, I thought we should try. The only possible side effect was spinal headaches after the procedures. Of course, there was always a possibility of infection.”Barlett found a telephone number for a man in Sikeston who had a spinal-cord injury and had gone to the same Chinese program for stem-cell treatments.“I wanted to know everything about it, including where it was done and the environment there,” she said. “Was the country itself safe? I have never left the United States. This man told me he could not walk, that he was paralyzed from the waist down. When he left there, he had sweating in his legs and could move his toes for the first time. He still wasn’t able to walk, but some small things had improved. That was the confirmation I needed.”On Jan. 1, Barlett created a Web site telling her daughter’s story. The fund raising for the trip to China began. Donation cans were set up in convenience stores. A benefit golf tournament was held. A family member in Chicago organized a union benefit. One man donated 120,000 airline miles for the round-trip tickets.The journeyThey flew from Chicago to Shanghai. It was a 15-hour flight.“We went to Hangzhou, which is a three- to four-hour drive from Shanghai,” Barlett said. “I kept thinking, ‘What are we doing?’ Every billboard was in Chinese. People were working in rice fields. What are we doing here? There was the culture shock part of it, but I was not scared. It seemed that every door we encountered opened.”They stayed in a hotel that was four blocks from the hospital.“It was a modern building, but the hospital was very different from what we are used to,” she said. “There was no HIPAA (medical privacy act). Lots of people were in your business. They called Rylea ‘Princess’ because to them, she looked like a Barbie doll. She got hugs and kisses because she stood out with her long, blondish-brown hair. I never felt like these people were put out. They were very willing to help.”The arrived on July 1.“Her first stem-cell transplant was done by IV on July 4,” Barlett said. “It was symbolic for us because it was the beginning of her independence.“They said it would be three to six months before we would see any changes. It takes that much time for stem cells to mature and become connectors. A week later, on July 11, she started responding to light. Before, when you put a penlight to her eyes, her pupils would not contract when light was shined in them.“When the doctor shined the light in her eyes, she shut her eyes and turned away. The doctor looked at me. We looked at each other. Everyone was completely silent. In broken English, the doctor says, ‘Congratulations.’ I started bawling.”Rylea had three spinal transplants and another IV transplant before they left the hospital. Each transplant involved 10 million cells. The trip and treatments were financed by nearly $40,000 in donations.After they returned to the United States on July 30, they met with Brothers so he could assess the girl’s progress.“We were hoping she would give us some reaction to light,” Barlett said. “She not only saw the light, she saw a chart across the room with a big ‘E’ on it. He determined that she has 20/400 vision.“I will never forget Dr. Brothers saying: ‘We have never had numbers. Do you realize we have never had numbers?’ He was so excited.”The plan now is to go back to China in March for another round of stem-cell transplants.“She will not get 100 percent vision from this, but you continue to build on what you have gained,” Barlett said.Now that the whirlwind trip to China is over, life is returning to normal for Rylea and her sister, Kyra, 4, and brother, Zack, 12. But the trip has opened a whole new dimension for their mother.“The parents of children with optic-nerve hypoplasia have seen her Web site and the progress she has made, and we’re getting thousands and thousands of e-mails, comments and phone calls,” Barlett said.“You want to help every one of them. You want to offer families hope because we know what it is like to not have any hope.”

Stem-cell Treatments Raise Hopes

2007-07-27T13:53:00.000-07:00

Saturday, 21 July 2007
SOurce: Deseret Morning News By Kaye NelsonAMERICAN FORK — Many travelers to foreign countries have goals to see new sights and try exotic foods.Travis Ashton's goal was a bit loftier — to receive stem-cell treatments at a hospital in China to help recover from a brain injury he suffered in a car accident seven years ago. Travis, 18, and his parents traveled to Hangzhou, China, in June for a five-week stay at the Beike Biotechnology Clinic where Travis was to receive four stem-cell treatments. He received six. "We had planned on four, and he ended up having two more," said Missy Ashton, Travis' mother. "The theory behind that is the more stem cells there are, the more that can develop." Travis had all but one treatment through spinal injections. The last one was administered intravenously. "They like to do one in your bloodstream," Missy Ashton said. She said the adult stem cells are harvested from umbilical cords and there were 10 million stem cells in each treatment. She was counseled that much of the progress a patient sees comes within six months of having treatments. The signs of progress might seem small to those not close to Travis' situation, but his mother said he can do things now he couldn't before. "He started to have feeling in the back of his tongue," she said. "He has more control over his saliva. He drools, but that has decreased 75 percent." She also said Travis can drink water now, something he had been unable to do since his accident. He can open and close his eyes without using his hand to manipulate the eyelids, and his hearing has also greatly improved. "Once you build connections between nerves and the brain, you can build on that," Missy Ashton said. "Then it's about building muscles." Travis' father, Jed Ashton, returned after one week to care for the family's other children. He is happy for the changes but isn't sure where the progress comes from. "I can see some subtle differences," he said. "They could be from the physical therapy or the stem cells. I'd like to think the stem cells had some positive effects — I just couldn't say for sure." Travis' care while at the hospital included more than just stem-cell treatments. "They did speech therapy, massage therapy, physical therapy and acupuncture," Jed Ashton said. He added that Travis was scheduled for therapy all day long, from 9 a.m. to 4 p.m. some days, and that kind of rigor can't be duplicated here because of time, family and money. The $50,000 price tag for the trip, a good portion gathered through local fund-raisers, paid for Travis' treatments as well as airfare and food. Asked if Travis would return for more treatments, his mother said she's not over the jet lag of this trip but would consider it. "If it's helpful to Travis, I can't see that anything would stop us," she said. The good thing about returning to the clinic is that the cost of his treatments will never rise. "The prices go up every quarter," Missy Ashton said. "But once you've been, you are locked in at that price." The clinic in Hangzhou is Chinese-run, but the lab is run by Americans with many American doctors and researchers on site. She said the hospital had to open a second floor because so many people were there for the injections. Missy Ashton thinks stem-cell treatments will be available in the United States, not in her lifetime, but perhaps for her grandchildren. "I think that in the next 50 years or so there will be more done — more funding, more research," she said. "But it won't be available to this generation." She said many people assume nothing is currently being done in this country. "There's a misconception that the U.S. isn't doing anything, but they are, and President Bush is, too," she said. "It shouldn't be a political issue. It should just be common sense with some guidelines because there are ethical issues involved." The measures of progress Travis gained from his treatments mean a lot to him and his family. "In the rehab world, these are huge things," his mother said.

Family Pinning Hopes on Bid to Treat Jack

2007-07-27T13:51:00.000-07:00

Thursday, 12 July 2007
Source: This is Scunthorpe.co.ukA FOUR-year-old Scunthorpe boy will start his revolutionary treatment for cerebral palsy tomorrow at the world-famous Beike clinic in China.Doctors in Hangzhou will make the first of a series of injections of cord blood stem cells into the spine of Jack Potter who was born a quadriplegic.During the treatment, which is not available in the UK, the stem cells flow directly into the brain.As previously reported, Jack's parents Andrew Potter and Jane Whitelock sought help from China after doctors told them there was no medical treatment for cerebral palsy, which is caused by a poor oxygen supply to the brain before, during or immediately after birth.Well-wishers financed the £20,000 trip which they completed at 12.30pm on Sunday, following a flight from Heathrow to Shanghai and a two-and-half-hour car journey to Hangzhou."It's an amazing set-up at the clinic which occupies the top floor of the Hangzhou General Hospital," Mr Potter (41) told the Scunthorpe Telegraph from the nearby New Century Grand Hotel."There are 12 families here at present, the majority of them Americans and Canadians. But we are soon to be joined by a family from Newcastle."Since Monday, Jack has been undergoing counselling and intensive physiotherapy, preparing for the first injection. He is not very happy about being in the hospital and having all the doctors and nurses around."But that is just Jack being Jack."We have found so many children who have improved during their treatment at the Beike clinic. It really is heartening."We believe we have chosen the best treatment for Jack. China is quite advanced in this field."It's blazing hot here in Hangzhou and the locals are obviously not used to seeing or having English people around."Everywhere we go they stare at us, but the people are friendly. We have only learned one word of Chinese so far - hello."During his month-long stay in China, Jack, a student at St Luke's Special School in Scunthorpe, will be treated with stem cells taken from the umbilical cords of healthy babies.His family hope these will develop into new nerve cells, repair brain damage and enable Jack to use his body for the first time in his life.The family also believe if the treatment works, it will open the doors for other cerebral palsy children in the UK.

Braille Institute's Blind Poster Child to Lead Local Vision Awareness Rally

2007-07-26T14:50:00.000-07:00

Anony MouseProvided by the Winning Kids Club PUNTA GORDA — By the time 18-month-old Cameron Petersen leaves for China next month, he will have already impacted the future of Florida's blind children. The Port Charlotte toddler's first public appearance is at the press conference and Vision Awareness Rally to be held in conjunction with the Beginning Braille Summer Camp in Punta Gorda. Earlier this week, Cameron was named the poster child for the Braille Institute of Florida, who is sponsoring the camp and rally on Tuesday at the Bayfront YMCA Center, 750 W. Retta Esplanade, Punta Gorda. The public is invited, and both events are free, with tax-deductible donations accepted. Camp begins at 9 a.m. with bag lunch at noon. The rally in the parking lot starts at 11 a.m. Congressman John Lewis, a strong supporter of independence for the blind, is expected to travel to Punta Gorda and speak on behalf of blind children. Other invited guests are Dr. Marc Maurer, president of the National Federation of the Blind; John E. Jordan, practicing blind attorney from Orlando, as well as the United States' lead nurse in the stem cell treatment to correct some forms of blindness. Cameron was diagnosed with optic nerve hypoplasia, an underdevelopment of the optic nerve, during pregnancy. It is one of the three most common causes of visual impairment in children. He is traveling to China because there is currently no treatment in the United States to help Cameron. Studies show that vision disorders are the most prevalent handicapping condition for a child, because not being able to see alters how a child understands and functions in the world, and affects their emotional, neurological and physical development. According to the Braille Institute, in Southwest Florida alone, there are about 10,000 5-year-olds who have not had an eye exam; and 180,000 children failed an eye test, yet were not referred to an eye specialist. On the educational spectrum, even when a child is diagnosed and treated for blindness, only 6 percent ever learn to read Braille. The other 94 percent remain illiterate their entire lives. That's why the Braille Institute is on an intense campaign to teach beginning Braille and to raise money to purchase a mobile coach. According to the institute's president, Gail Ghigna-Hallas, they are in the process of negotiating for the mobile unit, which will be called "Good Bumps on a Roll," that would travel throughout Southwest Florida to conduct free eye exams for children. "We will offer free eye exams to children at birth, 6 months of age, and again at 2 years and 5 years," says Ghigna-Hallas, whose is a registered nurse and holds a doctorate in education and psychology, with an extensive advocacy background for people with disabilities, especially children. An injury three years ago took the sight in Ghigna-Hallas' left eye. "To promote vision education and blindness prevention among the public, (the mobile coach) will also contain a braille library and museum, braille book/toy store, and a classroom to teach beginning braille and guitar to blind children, as well as employ blind individuals," Ghigna-Hallas said. The Braille Institute currently operates in Lee, Charlotte, Collier and Hendry counties, and has received significant donations toward the project and grants from Suncoast Schools Federal Credit Union, Duxbury Braille-Writing Systems, Enabling Technologies, local individuals and businesses, and continues to write grants to the Florida Department of Education, Division of Blind Services, Zonta Club of Bonita Springs, Kiwanis Club and others, until they have raised the $500,000 necessary to purchase the motor coach and get it up and running. Donations will also go towards the cost of Cameron's treatment and expenses. The Braille Institute of Florida is a United Way agency and division of the Winning Kids Club, a nonprofit 501(c)(3) tax-exempt organization offering children in Southwest Florida of all abilities and backgrounds instruction in beginning guitar, song writing, music, art, creative writing and rollerskating, as well as braille literacy and guitar lessons for blind and visually impaired children and braille for sighted slow readers to increase reading and other academic scores.

Trail Ride Fundraiser Planned for Local Toddler

2007-07-15T14:32:00.000-07:00

Sun Intern By Teddi Thosath The tickets are purchased, about $20,000 has been raised, and for 18-month old Cameron Petersen's parents, the hope of seeing again is just a month and thousands of miles away. Cameron Petersen is a Port Charlotte tot who is legally blind due to Optic Nerve Hypoplasia, and is scheduled to fly to China on Aug. 6 for a case study to undergo umbilical cord stem cell surgery. Petersen's parents, Melissa VanGorp and Zachery Petersen, as well as his grandparents and the lead medical consultant with Stem Cells China, are all optimistic that the procedure will give sight back to the blind toddler. After about a month and a half of fundraising, the Petersen family has raised about $20,000 for the flight and surgery, about one-fifth of their goal. Michael Rudden, vice president of the Punta Gorda Horseman's Association, has organized a sponsored trail ride on July 28 to help raise money for Cameron. The rides starts at 9 a.m., with three different rides planned — the first one lasting an hour, the second two hours, and the third three hours. Trails will be marked for the rides, and all riders should be back by noon to meet the family. The ride is scheduled to take place at Deep Creek Reserve, Peace River Street, DeSoto County. A number of prizes are to be given away during the event, Rudden said, and everyone is invited. Nonsponsored riders over the age of 18 are asked to pay a $30 donation, and the request for those 17 years or younger is $15. For more information, call 941-639-4107 or e-mail
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"We are still chugging along, and the actual stem-cell part of it is now covered," Carol Petersen, Cameron's grandmother, said earlier this month. "He has his ups and downs. But I just feel really positive about all this." The treatment alone costs $15,000. An additional $10,000 to $20,000 is needed for a Hyperbaric Oxygen Treatment chamber once Cameron returns home. The family is estimating $100,000 for the total expenses. When Cameron was diagnosed with ONH, a leading cause of blindness in children that also interfered with his pituitary gland, his parent's were told there were no treatments available. However, after researching online they found Stem Cells China, where they have successfully infused stem cells into patients suffering from numerous other diseases and disabilities. Stem Cells China has established a 98 percent improvement rate with patients undergoing treatment for other disabilities, according to the organization's Web site. This procedure, which is not available in America, takes harvested umbilical cord stem cells and, in a very technical process, the stem cells will then be transplanted into Cameron. Stem cells are unspecialized cells that can replenish their numbers for long periods through cell division. Also, after receiving certain chemical signals, the cells can differentiate or transform into specialized cells with specific functions, according to Stem Cells China. The study is the first of its kind for ONH patients. The treatment includes four stem cell transfusions of 10 to 15 million stem cells each, Melissa VanGorp said. With each stem cell transplant, they also give the patient a transfusion of "neural growth factors" to encourage the stem cells to find their targets and transform into new neurons. After the treatments, Cameron will undergo intense daily therapy programs, which range from speech therapy to a type of Chinese massage, to promote the success of the procedure. "Now, we have the technology to help these children to see," Kirshner Ross-Vaden, the vice president of foreign patient relations and the lead medical consultant with Stem Cells China, said. "They don't have to go through their life blind. (But) no one knows for sure, someone has to go first. These kids are the pioneers. They may very well pave the way for all of the children of the future." Cameron is one of five children to undergo this treatment for ONH patients. Ross-Vaden, a registered nurse and a former Air Force medic, said Cameron will probably undergo lumbar puncture treatments, which inject the stem cells directly into the cerebral spinal fluid. The first couple of days, however, will be strictly for evaluations and tests. She said that, assuming everything with the medical section looks good, they will then proceed with the transplants. They are hoping that the stem cells will mix with Cameron's cerebral optic nerves and repair them. Ross-Vaden, who was in Chicago on Friday, said they are currently providing treatments to another child from the United States, and last month performed the procedure on a girl from Romania. "Right now the girl from Romaina's mom said she is responding more visually, but it's too soon to tell," Ross-Vaden said. She stressed that the procedures are safe and they only use umbilical cord stem cells, which have been used in this type of treatment for 20 years. Ross-Vaden believes the treatments are "extraordinarily safe," and has even undergone the treatment herself for a medical problem. "These kids are the first to come through with a primary diagnosis (of ONH). For the entire world, this has (previously) been called an untreatable diagnosis," she said. "I feel really really strongly that, historically, we have been wrong." Ross-Vaden first learned about stem cell treatments when her own son had a servere brain injury. Even with her medical research background, she found it hard to find reliable information to help her son. At the time, she took her son to Mexico for treatments. Unfortunately, she lost her son, but continued her work. Stem Cells China offered her a position to help expand their programs for children. For more about the treatment, visit www.stemcellchina.com. "This is a monumental step in medicine," Ross-Vaden said. "I wouldn't be doing this if I didn't think it would be possible."

Brave Jack Sets Off to China

2007-07-07T13:50:00.000-07:00

Saturday, 07 July 2007
Source: This is scunthorp.co.uk A Brave four-year-old is on his way to China this morning to undergo pioneering treatment.Jack Potter, a pupil at the St Luke's special school in Scunthorpe, left home at 6.30am today to pioneer treatment in China for British children like himself who are born with cerebral palsy.On Thursday, he was joined at Scunthorpe's Warren Lodge pub by many of the well-wishers who made his ground-breaking trip possible by raising more than £20,000 in less than 11 months.Hosting the send-off party were Jack's parents, Andrew Potter and Jane Whitelock, of Sedgewood Way, Scunthorpe, who will spend a month with him at the world-famous Beike clinic."We have been absolutely amazed and overwhelmed by the response to our son's appeal," said Mr Potter (41)."We just cannot thank people enough for what they have done for Jack."At one stage we were going to take out a second mortgage on our home to pay for the trip - but then Jack's friends stepped in."Mr Potter said, since last summer, cash had been raised by teenagers on Lifestyle projects, youngsters, parents and staff at the Happy Stars playgroup in Scunthorpe, and regulars at the Warren Lodge and the First and Last, Kirton in Lindsey.The cash also came flowing in from a cabaret night and auction at Ashby Decoy Golf Club, a sponsored bike ride and a host of other events.This afternoon Jack, nephew of former Scunthorpe United footballer Neil Cox, and his parents will board their flight from Heathrow with the best wishes of Virgin Air boss Sir Richard Branson, who has arranged VIP treatment.Following their 13-hour flight, the family will be met by a chauffeur-driven car at Shanghai to cover the two-hour journey through China to the Beike clinic at Hangzhou.First thing Monday, Jack, a quadriplegic with no back support, will meet medical consultant Kirshner Ross-Vaden and his team to start a course of injections of cord blood stem cells in a bid to bring his body back to life.If the treatment is a success, the four-year-old from Scunthorpe will be the first-ever child from the UK to make the life-changing trip.Keeping his fingers crossed back home will be elder brother Matthew (14) who is on the books of Scunthorpe United FC.

Blind Baby Will Get Stem Cell Injections

2007-07-06T14:54:00.000-07:00

Friday, 06 July 2007
Source: WBKOA Bowling Green baby will go to China for ground-breaking stem cell research to correct his vision.Six-month-old Jackson Blackford bounces and squeals like any other happy, healthy baby, but what you don't realize is that he can't see.He has an under-developed optic-nerve, a condition known as optic-nerve hypoplasia."When he looks at something he doesn't pick up the image and send it to his brain so therefore it leaves him legally blind," explained his mother, Rachael Stayer.Jack's parents first realized something was wrong when he was three-months-old."We noticed that he wouldn't pay attention to his toys and his eyes would kind of dance around," Stayer said.His mother learned of the website www.stemcellschina.com. She immediately emailed the Chinese hospital that was looking for applicants in a special case study where doctors use stem cells from umbilical cords of healthy live-birth babies."We got the ball rolling automatically. They were really anxious because he's so young. It's going to make a big difference than if he were an older child," Stayer said.Jack was one of five children in the world selected for the revolutionary treatment. He will receive umbilical cord stem cells that will hopefully repair his optic-nerve and restore his eyesight."His father and I don't ever want to be in the position where we have to tell him we didn't do everything we possibly could for him," Stayer said.

Optic Nerve Hypoplasia; Jackson Blackford

2007-07-06T13:17:00.000-07:00

Blind Baby Will Get Stem Cell Injections

Friday, 06 July 2007
Source: WBKOA Bowling Green baby will go to China for ground-breaking stem cell research to correct his vision.Six-month-old Jackson Blackford bounces and squeals like any other happy, healthy baby, but what you don't realize is that he can't see.He has an under-developed optic-nerve, a condition known as optic-nerve hypoplasia."When he looks at something he doesn't pick up the image and send it to his brain so therefore it leaves him legally blind," explained his mother, Rachael Stayer.Jack's parents first realized something was wrong when he was three-months-old."We noticed that he wouldn't pay attention to his toys and his eyes would kind of dance around," Stayer said.His mother learned of the website www.stemcellschina.com. She immediately emailed the Chinese hospital that was looking for applicants in a special case study where doctors use stem cells from umbilical cords of healthy live-birth babies."We got the ball rolling automatically. They were really anxious because he's so young. It's going to make a big difference than if he were an older child," Stayer said.Jack was one of five children in the world selected for the revolutionary treatment. He will receive umbilical cord stem cells that will hopefully repair his optic-nerve and restore his eyesight."His father and I don't ever want to be in the position where we have to tell him we didn't do everything we possibly could for him," Stayer said.

Rita and Mason head to China again

2007-06-12T13:33:00.000-07:00

June 12, 2007
Clarksville Mom Again Taking Her 11-year-old Son to China for Stem-cell Treatment

News and TribuneBy Matthew Ralph CLARKSVILLE — Surrounded by strangers wearing white nurse’s uniforms and masks covering everything but their eyes, a jet-lagged and emotionally drained Rita Badger did the only thing she could think to do when presented with a medical-release form written entirely in Chinese.“I prayed and asked God if it was the right thing to do,” said Badger, a Clarksville woman who traveled to China with her 11-year-old son Mason for his stem-cell treatments last September.Signing the medical-release form, Badger gave a medical staff she had to use a translator to speak with permission to inject some 60 million stem cells taken from the umbilical cords of healthy newborn babies into her son’s spine. Eight months after the four-week hospital stay — where in addition to the injections, Mason underwent extensive physical therapy — Badger is convinced that the unproven technique more and more Americans are leaving the country seeking has made a difference. The second of Badger’s three boys, Mason suffers from cerebral palsy and autism. His vision is impaired and ordinary activities most healthy people take for granted are a challenge — he eats through a feeding tube and isn’t able to walk on his own. He suffers from routine seizures.“I see my son coming out,” Badger said, sitting in her living room as Mason climbed onto her lap and wrapped his arms tightly around her neck. “For him to put together the sentence ‘I want to go to McDonald’s’ is big for him. Before all he could make out was ‘Donald’s.’” Despite the high price tag — travel, a month stay at the hospital and the treatments costs $22,000 — Badger has planned a second trip to Nanshan Hospital. The treatment is unavailable in the U.S.“I’d rather have it done here at the University of Louisville and not have to leave my family for a month,” she said.The trip and its associated costs — the Badgers are relying on the generosity of others to help pay the bills — aren’t the only obstacles to overcome. Doctors in the U.S. have widely criticized the procedure and the mere mention of stem cells is sure to draw raised eyebrows given the heated political and religious debate about the use of embryonic stem cells.“I think it’s important for people to know that these stem cells come from umbilical cords of healthy babies,” Badger said. “They come from something that’s just thrown away.”The Badgers aren’t alone. More than 170 patients from 29 countries have been treated at Nanshan Hospital, according to published reports.Good, bad or indifferent, the Badgers likely won’t be worrying too much about their detractors.When Mason was an infant, Badger said doctors told the family they should consider putting him in an institution. “We were told he would never be able to do anything,” she said. “But I won’t take no for an answer.”

Family Hopes to See Cure in China

2007-06-01T13:29:00.000-07:00

June 1, 2007

Sun-herald.comBy Thddi TosathA local family is planning a trip to China in August for their 16-month-old son, Cameron, who was diagnosed with optic nerve hypoplasia. Cameron has been selected to receive umbilical cord stem cell treatments, in the hopes that the experimental surgery will give Cameron his sight back. The treatment includes four stem cell transfusions of 10 to 15 million stem cells each.CHARLOTTE HARBOR -- As smiling 16-month-old Cameron Petersen bounced in his father's lap on Thursday afternoon, he reached for the sounds of his mother's voice. The bouncing blond tot, who is legally blind due to optic nerve hypoplasia, reached again as his mother, Melissa VanGorp, began to explain the treatment Cameron will receive in China this August.Cameron is one of five participants for a case study in China, where he will undergo umbilical cord stem cell treatments. Along with his parents, VanGorp and Zachery Petersen, Cameron will leave Aug. 6 for the groundbreaking medical procedure -- the first stem cell replacement surgery for patients with ONH."The doctors said there was nothing we could do about it. There wasn't a treatment yet," VanGorp, 24, said. The pregnant mother, due Sept. 13, now has hope for her son.After researching online, VanGorp's father came across success stories from Stem Cells China, where they have successfully infused stem cells into patients suffering from numerous other diseases and disabilities. Stem Cells China has established a 98 percent improvement rate with patients undergoing treatment for other disabilities, according to the organization's Web site."They don't want to promise too much, but the results speak for themselves," said Donna VanGorp, Cameron's grandmother."We are hoping it will make a significant amount of difference -- it hasn't been done (on ONH patients)," added Petersen, 26.This procedure, which is not available in America, will take the harvested umbilical cord stem cells and, in a very technical process, transplant them into Cameron. Stem cells are unspecialized cells that can replenish their numbers for long periods through cell division. After receiving certain chemical signals, the cells also can differentiate or transform into specialized cells with specific functions, according to Stem Cells China.The study is the first of its kind for ONH patients. The treatment includes four stem cell transfusions of 10 to 15 million stem cells each, VanGorp said. With each stem cell transplant, they also give the patient a transfusion of "neural growth factors" to encourage the stem cells to find their targets and transform into new neurons."He's a sweet little baby who will never see," said Carol Petersen, Cameron's grandmother. "This is his chance. It could be his miracle."Cameron will receive the treatments in Hangzhou, China, from Aug. 8 through Aug. 26."It's real scary cause he is one of the first ones (to have the experimental procedure)," VanGorp said. "We hope it will help his health a lot too."ONH is a condition, present at birth, in which there is underdevelopment of the optic nerve, according to Blind Babies Foundation.The underdevelopment of the optic nerve has also interfered with other bodily functions, causing problems with his blood sugar, VanGorp said. On Thursday, Cameron had another appointment with his doctor due to a spiked fever."We are still a little worried, it's happening so quickly," VanGorp said. "And, it's a lot of money."The treatment alone costs $15,000. An additional $10,000 to $20,000 is needed for a Hyperbaric Oxygen Treatment chamber once Cameron returns. The family is estimating and hoping to raise $100,000 for the total expenses.On June 9, they will hold a bake sale and car wash at the Quality Homes of Port Charlotte parking lot. A bank account has also been set up for Cameron at Bank of America.

Some Go Outside of the U.S. for Stem Cell Treatments

2007-05-27T13:48:00.000-07:00

Sunday, 27 May 2007
Source: The Salt Lake TribuneBy Lisa RosettaThree months after experimental adult stem cell treatment in China, Tori Schmanski can take a cookie from her father's hand. It's a big step for the 16-year-old, who two years ago suffered a brain injury that left her unable to walk or talk. The Schmanskis, like a growing number of Americans, feel they can't wait for U.S. scientists to prove new adult stem cell therapies safe or effective. With few treatment options here, the Orem girl's parents took her to the Beike Biotechnology Company's stem cell clinic in Hangzhou in January. The family paid $20,000 for five injections of 50 million adult stem cells into Tori's spinal cord fluid, with aggressive physical therapy and acupuncture. Her last injection was Feb. 12, and the family believes it will take up to eight months for the therapy to work, said her father, Tim. Still, "her swallowing, eating and chewing are much improved," he adds. Tori has been able to finish off an apple and is vocalizing more, and her family hopes for even "bigger and better improvements," he said. At 14, Tori was a dancer and snowboarder with dreams of attending Stanford University and becoming a doctor. In June 2005, a car she was riding in rolled and landed in a canal, trapping her underwater for about 20 minutes. At least eight other families have contacted the family's Web site, prayfortori.com, then traveled overseas themselves. One Utah family, whose daughter suffered a brain injury in a car accident, is in China now, he said. The Schmanskis will likely take Tori back for another treatment next year. "It is the thing that will help (Tori) the most eventually, I'm convinced of that," said Tim, who urges increased funding for research. "In the end, it's just going to help so many people. I don't see how we can not do it."

A Long Journey Toward Health

2007-05-17T13:45:00.000-07:00

Thursday, 17 May 2007
Source: Fort WayneMikey Riley heads to China for a stem cell transplantEditor’s note: In February, The News-Sentinel first told the story of Mikey Riley of rural Fort Wayne, who has an aggressive form of multiple sclerosis and is in need of a stem-cell transplant. The family’s health insurance company denied payment for the transplant so Riley sought other options. Today is the first in an occasional series of stories and journal entries from Riley, who is going to China for the health care he desperately needs.Twenty-year-old Mikey Riley today began the longest journey of his life – not just in miles, although they are aplenty. From Indiana to Shenyang, China, where he is headed, is about 8,000 miles by air.It is a journey of hope and faith and a quest for health.Since early this year, the Fort Wayne man has been seeking a stem cell transplant that doctors at Northwestern University in Chicago and in Indianapolis said was his only hope to stop his multiple sclerosis.When Mikey and his parents, Pat and Dianna Riley, realized they could not pay out of pocket for a $250,000-$300,000 stem cell transplant in the United States, they opted for a program called Stem Cell China in Shenyang. The stem cell transplant there is about $23,000, plus travel and living expenses.A U.S. liaison for Stem Cell China heard about Mikey’s case from the story in The News-Sentinel and contacted him. After Mikey talked to several other people with MS who had gone to Shenyang, and after considering the matter in prayer, he decided China was the direction to go.In the next two months, family, friends, neighbors and strangers helped raise more than $40,000 to cover the transplant and related expenses.“It’s just so awesome. I’m just amazed at the generosity of people,” he said after an April 19 benefit at Landmark Conference and Reception Centre in Fort Wayne.A few weeks ago, a neighbor put fliers on every house in the Leo Crossing neighborhood, telling people about Mikey and his need.“The flier said people could turn their porch light on if they wanted to contribute,” Dianna Riley said. That night, neighbor Carolyn Juergens and her son Andy collected more than $800 for Mikey and his mom, who is accompanying her son to China.Wednesday afternoon, as Mikey and Dianna packed suitcases for what they anticipate to be a six-week stay at the hospital in Shenyang, it was more than just clothes, snacks, MRIs and Mikey’s medicine they were packing.They are taking along the love, prayers and support of the people of Fort Wayne, Dianna said.Pat Riley, who is a teacher and coach at Lane Middle School, stood in the kitchen, heating water for his wife’s coffee. Sending a child halfway around the world for medical care is disconcerting for any parent. But also, like most any parent, he wants to give that child whatever hope there is.“This has been several months in the planning. They just need to go now,” he said.Had Mikey been able to have the transplant at Northwestern, it would have involved harvesting some of his own stem cells and tweaking them so only healthy cells were retained, then putting them back in his body after the disease-causing cells in his body were destroyed using chemotherapy.In Shenyang, however, doctors will use umbilical cord stem cells collected from the cord blood of newborns. These cells can be coaxed to become cells specific for myelin, which his nerve fibers lack, then will be infused back into his body.Mikey knows the Chinese treatment is temporary, in most cases. It might need to be repeated in five years, perhaps sooner. He also knows U.S. doctors are skeptical.“I’ve received no support from my doctor at Northwestern or in Indianapolis,” he said. But for now, he said it’s his best shot at living a normal life – a life without tremors, severe headaches and vertigo, side effects from medications and other complications.He and his mother will live in his hospital room throughout the treatment, which will involve multiple infusions of stem cells. Mikey was contacted recently by another American family at the hospital. The woman, paralyzed from the waist down in an accident, has been undergoing stem cell treatment since January.“They are seeing a difference,” Mikey said. So the woman, her husband and their three children have decided to stay longer and continue treatments. But they have run out of certain supplies they cannot buy in Shenyang, so they gave a list to the Rileys, who packed a 70-pound box of items that will be shipped.That family is ensuring the Rileys will have a microwave, refrigerator, a crockery cooker and a few other essentials needed for their hospital-room stay, Dianna said as she poured hand sanitizer, shampoo and other products into small travel bottles.“We know there is a Wal-Mart there, but they may not have the things I like to eat,” including Skippy natural peanut butter, a staple in her diet. She packed several jars in her suitcase.Translators will be available to them when they land in Shenyang and as needed at the hospital. “I should have learned a few words. I don’t know any,” Dianna said, a little panicked at the thought of trying to find their way in a foreign country.“It’s all going to go fine,” Mikey said. “I’m ready to experience the culture. I’m not really worried. I’m pretty excited.”Pat said his son, who attended the Merchant Marine Academy in Michigan until MS forced him to drop out in spring 2006, has always had a tenacious spirit.“For 20 years, we said there must be a reason for it,” he said. “Maybe this is it.”