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    Blood Drive to Honor Girls Fighting Mitochondrial Disease

    Friday, January 14, 2011

    For the past four years, Mallory McElhaney has fought a battle with a potentially deadly diseaseThe 6-year-old girl, who loves school and ballet, was diagnosed with a rare mitochondrial disorder called Leigh’s disease. Her sister, Finley McElhaney, 2, suffers from the same illnessSince Mallory

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    Mother of Sick Boy: 'They Tell Me This Is His Last Good Year'

    Friday, January 14, 2011

    McCONNELLSBURG, Pa. -- Winter Troia does not speak with the voice of a mother going through hell, even when she describes what's happening to her children as a nightmareHer tone is steady. Her words matter of fact, even positive at times"They tell me this is his last good year," she said of her s

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    Local Acts of Kindness Ease Fairview Woman's Woes

    Thursday, January 13, 2011

    It was only a few months ago when Jeannie Kinney said she felt the weight of the world on her shouldersA trusted friend helping Kinney with household chores and errands was indicted for allegedly stealing more than $30,000 and helping to wipe out Kinney's savingsSeemingly, Kinney — who must use

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    Family's Fundraising for Children's Liver Disease Foundation

    Thursday, January 13, 2011

    Six months after a massive fundraising effort by his family, Luke Alexander has convinced his school to hold a further drive for charity fundsLuke, 10, suffers a rare liver condition called biliary atresia and has undergone three life-saving operationsBecause his family received so much support f

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    Fight for Terminally Ill Daughter Leads to Discovery That Could Benefit Many

    Thursday, January 13, 2011

    The grit of an Austin couple with a terminally ill child, the generosity of their friends and the know-how of scientists has led to the development of a genetic test for 448 rare but severe disorders that could be on the market later this yearA paper published Wednesday in Science Translational Me

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    All Smiles as Brave Toddler Rosie Battles Rare Disease

    Thursday, January 13, 2011

    A ‘happy and cheerful’ toddler is battling a rare disease which affects her liver, heart and kidneysTwo-year-old Rosie Gill suffers from Alagille Syndrome, a genetic disorder that causes abnormalities in many of her major organsAs a result the youngster, who lives in Marple Bridge with her mu

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    Boy Battling Rare Disease Inspires Carnival

    Thursday, January 13, 2011

    One day, when Lincoln Wheelock was 2, his parents noticed a strange lump on the back of his neckSeveral weeks later, the family was given a diagnosis that doctors told them would be life-altering: Their son had fibrodysplasia ossificans progressiva (FOPThe rare genetic disease, which gradually re

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    The Road to Boston Passes Through Arizona

    Wednesday, January 12, 2011

    A man who once ran 63 marathons in 63 days to raise money and awareness for children with a rare genetic disease is hoping to conquer the Boston Marathon in April. But first, he needs to prevail in PhoenixTim Borland wants to run the 2011 Boston Marathon, but not just by himself. The 35-year-old r

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    Woman With Gigantism Shows Tremendous Improvements

    Wednesday, January 12, 2011

    SAN FRANCISCO -- Tanya Angus was transported for a last ditch treatment at UCSF, and doctors now believe the treatment may have workedWhen we first met Tanya, she had just journeyed 600 miles by ambulance from Las Vegas, hoping doctors at UCSF could finally stop her body from growing, which is the

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    Wallasey Mum Jayne Hughes Chosen to Speak at Prestigous Rare Disease Day Event at House of Lords

    Wednesday, January 12, 2011

    A Walassey mum and charity campaigner has been invited to speak at a prestigious event at the House of Lords on next month’s International Rare Disease DayJayne Hughes set up the charity Amy and Friends after her daughter Amy was diagnosed with the debilitating premature ageing disorder Cockayne

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