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