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

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

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

Lighthouse donation could help Weston see for first time

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


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

See Elvis To Help Will See

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



BY AMY FENNELL CHRISTIAN

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

Eyeing a remedy

By Carol Vaughn • Staff writer • May 7, 2008

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

Money Floods in for Little Megan

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


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

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

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

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


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

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

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

Doorsteps

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

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

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

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

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

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

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

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

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

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

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