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/

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

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

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

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/

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)

Hannah Montana Tickets Helping Girl Get Eye Surgery

By Ryan Duffy
First Coast News

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

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

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

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

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

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

Rylee has a rare eye condition and is nearly blind.

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

But the operation costs $60,000.

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

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

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

So far the Lovetts raised $25,000.

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

Rylea Update and DVD on ONH/SOD

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














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















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

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














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















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














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















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

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









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

Amaya has finsihed her stem cell treatment in China

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

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

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

Stem cell treatment in China offers girl hope for vision

China offers girl hope for vision

By Sarah Nail
SEDALIA DEMOCRAT

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

Big Adventure and A Cure

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

Auction Helps Family with Trip and Treatment Costs

Auction Helps Family With Trip and Treatment Costs

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

Community Plans Fundraisers to Help BG Infant

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



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