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Fourteen-year-old Emily Deacon has a chromosome disorder that is so rare even the specialists don’t have a name for it. She was born with club feet and epilepsy and, as a teenager, still does not speak and is in a wheelchair. When she was first diagnosed, her mum, Liz, said...
NEW DELHI — Recuperating in the cardiac care unit of Batra Hospital, 20-month-old Stawan Bijal Shah refuses his feed and cries for his mother. He is one of the youngest patients to undergo a coronary artery bypass surgery for a rare disease which damaged his heart. When Stawan was just...
BURTON, Ohio — The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler. His muscles were growing increasingly rigid and becoming more difficult to move. He went from leg braces to a walker and, finally, a wheelchair by the time he was 5....
Nelson’s eighth annual ALS walk was a huge success, according to organizer Gord Shannon. More than 175 people from across the West Kootenays came out to walk from Lakeside Park to the Nelson airport and back on June 7, which raised around $40,000 for the ALS Society of Canada. “This...
Devon Parks doesn’t just believe in miracles — she says she has proof they exist. Parks’ 3-year-old son, Isaiah, was born with the rare disease called DiGeorge Syndrome, but he has outlived his 2-year life expectancy. He recently was named 2009 Child of the Year by the Pennsylvania Elks Home...
Skelly’s Bar in Ballymahon is to play host to a special fundraising night in aid of the Friedeichs Ataxia Society of Ireland on Friday, June 13 next with a host of excellent local acts performing on the occasion. Friedeichs Ataxia is a rare genetic and progressive disorder of the central...
WASHINGTON, D.C. — Muscular dystrophy is one of the most common genetic disorders. One in every 3,500 baby boys is diagnosed with the condition. The most devastating type — Duchenne muscular dystrophy — slowly robs kids of their muscles, and they rarely live past age 20. Researchers say they’ve made...
Kim Morey knows everyone in town. It’s only natural — she’s lived in Bentonville all but her first year of life. Her friends tease that a lunch date doesn’t pass without Morey seeing a face she recognizes. But in those short, nice-to-see-you conversations, old friends probably can’t make out what’s...