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| Government Fiddles While Afflicted Burn |
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| Donnerstag, 01. Februar 2007 um 04:57 Uhr | |||
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There are no translations available. Source: Barn Stable Patriot Stem cell funding would give local boy new hope for cure Nero fiddled while Rome burned. Now the U.S. Government fidgets over stem cell research funding while a 15-year-old boy in a quiet cottage on Route 6A, West Barnstable, struggles mightily for a comprehensive life. Jonathan Raylove’s best current hope to overcome brain damage caused by trauma (he nearly drowned when he was 4) is via the injection of stem cells that can replicate cells damaged in the accident. Jonathan now has a condition called hypoxic ischemic encephalopathy, which deprives him of movement, speech, laughter and even swallowing. The Patriot interviewed his parents a year ago last week, after Jonathan had undergone stem cell treatments in Mexico, there because the procedure was outlawed in the United States. “The Mexican experience didn’t do much for Jonathan, except connect us to China,” Jonathan’s father, Robert Raylove, said this week. China is leading the world in human stem cell therapy, Raylove said, while noting his family and thousands of others are still waiting for the pioneering human therapy and new stem cell lines to be sanctioned in the United States. On Jan. 11, the U.S. House passed a bill to extend federal research funding to newly derived stem cell lines, a measure backed squarely by the Rayloves and families of children with cerebral palsy, and elders with Alzheimer’s, Parkinson’s and other afflictions that might be ameliorated or cured via stem cell therapy. Raylove is an acutherapist working out of the 6A cottage, and his wife, Edith “DeeDee” Tonelli, Ph.D., is a licensed family and marriage therapist who stays home to care for Jonathan and accompany him on faraway odysseys in the quest for a cure. Two of those scientific adventures have been to China, one near Hong Kong last March, and a second in Beijing in September, where, Robert Raylove said, “Jonathan underwent a different technique, much more intense. He received daily stem cell injections into the spinal fluid and IVs (intravenous feeding) of researched supplements to help stem cells grow.” Raylove paused a moment. “It takes a lot out of Jonathan … out of the family.” While Nero fiddles, the Rayloves wait for the day therapy will be available close to home. Has any of this helped Jonathan who, despite his condition, continues to grow longer and larger with age? “It has,” says his father with guarded joy, “in observable ways. After the first China visit, we noticed stronger head control, from side to side that was pretty obvious. He also manages secretions a lot better. He swallows little, but is managing saliva better, has a stronger cough, and that’s a big thing…because it makes him less fragile… to aspirate. “He’s more attentive, will turn his head to look at you. When he hears my voice as I walk across the room, he turns his head in the direction that I’m walking. He never did that before.”
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| Zuletzt aktualisiert am Donnerstag, 01. Februar 2007 um 04:59 Uhr |