Local child gets sight back after stem cell treatment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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.”