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| Stem Cells Offer New Hope |
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| Batten Disease | |||
| Mardi, 16 Janvier 2007 08:00 | |||
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There are no translations available. Source: The Canadian Press By Michelle Ruby Ontario girl with rare disorder seeks treatment in China BRANTFORD, Ont. — Lori Keeping and daughter Jamie will travel next month to China where the five-year-old will have a costly and controversial stem-cell treatment that her family hopes will save her life. Jamie has Batten disease — a rare and degenerative illness that renders its young victims blind, speechless and paralyzed before it kills them. The Brantford, Ont., girl was about three when she was diagnosed. She can’t walk or talk and is fed from a tube. The family suspects she is blind. She, her mother and Keeping’s mother will leave for Beijing on Feb. 12. The trip to China and the stem-cell treatment, expected to cost up to $50,000, will be covered through public donations. Fundraising events and contributions to a trust account set up for Jamie, and her brother, Carson, who also suffers from Batten, amount to just over $100,000. “We feel hopeful,” Keeping said in a recent interview. “It (the treatment) gives us something to look forward to.” Batten disease is caused by a defective gene — which must be present in both parents — that fails to create an enzyme needed in the brain to help dispose of cellular waste. The waste piles up and kills healthy cells. Most victims die before they reach their teens. The genetic disorder is so rare that, according to Keeping’s research, there have only been 48 diagnosed cases in Canada in the last 100 years. While the family had originally planned to take both Jamie and Carson to China, Keeping said they are now hopeful Carson can get help closer to home. Carson, who will turn three in April, is on a waiting list for experimental stem-cell treatment in Portland, Ore. At a children’s hospital in Oregon in November, a six-year-old boy with Batten was given injections of neural stem cells directly into his brain. The surgery was part of a clinical trial with an immediate goal of healing Batten-afflicted children. In the coming decades, however, this work could lead to treatments for neurodegenerative disorders that affect millions, such as Huntington’s, Alzheimer’s and Parkinson’s diseases. Keeping said Carson’s health remains good — he continues to be active — but she worries that time could be running out. Jamie was three when she first began having seizures that are an early sign of Batten. “We don’t want to wait too long,” Keeping, 28, said of Carson. “We’d like to keep him walking.” She said that if Carson isn’t successful getting treatment in Oregon, the family will take him to China. The procedure in China involves blood stem cells, which have been taken from umbilical cords with the consent of new mothers, being injected in the children’s spines and brains where, it is hoped, they will start to repair the damage done by Batten. Keeping said she doesn’t know all the details about the surgery — she has been communicating with experts in China mostly through e-mail — but understands a small hole will be drilled into Jamie’s skull through which more than five million stem cells will be inserted in her brain. She will spend several days in intensive care. Keeping expects to be in China for about a month. Keeping’s husband, Sheldon Huelin, 33, will stay behind in Brantford, southwest of Hamilton, to care for Carson and an older son. Huelin said the family has been deeply affected by people’s generosity toward their children. “We’ve had a lot of response from right across the country, especially from Newfoundland, where we’re from.” It’s all a little overwhelming, he said. “We live in a society where everybody’s so busy. You don’t think people are thinking about stuff like this.” Details about the family’s story and upcoming fundraisers are available at www.jamieandcarsonshope.com.
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| Mise à jour le Jeudi, 25 Janvier 2007 02:12 |