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| Parents Raise Money for Trips to China to Try to Give Sight to Children |
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| Optic Nerve Hypoplasia | |||
| Vineri, 02 Mai 2008 07:10 | |||
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"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. See the video
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