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    Dravet: Three Families Unite to Take on Rare Syndrome

    Wednesday, August 18, 2010

    Caeden Shaughnessy’s life changed with a violent shakeAt 9 months old, he collapsed into a 45-minute seizure, and paramedics rushed him to the emergency room“They had a really hard time controlling it,” his father saidDoctors called it a common febrile seizure and said the fami

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    Ella's Brave Battle Is Set to Hit TV Screens

    Wednesday, August 18, 2010

    A brave tot who had both kidneys removed because of a rare illness is set to become a TV starThe largest children's hospital in the UK, the Royal Manchester Children's Hospital, has opened its doors to television cameras for a new ITV1 show Children's HospitalAnd the producers, Maverick TV, want

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    Fundraiser to Help Fight Rare Disease

    Tuesday, August 17, 2010

    Five years ago our third child, Eva Nichole, was born with many health and developmental problemsShe had one kidney, heart problems, facial paralysis, feeding issues, delayed growth, and was deaf and blind. We learned Eva has CHARGE syndromeCHARGE syndrome is a recognizable (genetic) pattern of b

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    Golf Outing to Benefit Toddler

    Tuesday, August 17, 2010

    Manassas Park, Va. -- A "Tee Off for Tyler" fundraiser day is planned for Tyler Philopena on ThursdayThe event will begin at noon with a golf outing at Generals Ridge Golf Course in Manassas Park for $125 that includes golf and dinnerOnly dinner is $50 and it will be at 6 p.m. at Clarke's Grill &

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    Little-Known Disease Ails Boy, Mom, Grandmother

    Tuesday, August 17, 2010

    Polycystic Kidney Disease might not get the media attention that other medical conditions do, but it's still serious business for those who struggle with this genetic disorderGenerally shortened to just PKD, this disease is characterized by multiple, fluid-filled cysts that form on the kidneys tha

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    Kristin Paulson Is One of a Kind

    Tuesday, August 17, 2010

    MANKATO -- Kristin Paulson is pretty and sweetShe’s also modest and optimistic. She was a dancer. She was homecoming queen at Mankato East High School last fall. She graduated in the spring, and she’ll be a freshman at Minnesota State University this fallOn the surface, she has everyt

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    Mount Laurel Girl Overcomes Gaucher Disease to Excel as Cheerleader

    Tuesday, August 17, 2010

    Lyric Generals twirls and whirls through a toe-touch back tuck faster, and far more gracefully, than I can twist my tongue around the phraseBut the speed of her stunt isn't what stuns me. It's that this 12-year-old Mount Laurel cheerleader can do it at allBefore she was diagnosed at age 5 with Ga

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    Rare Illness Turns Life Upside Down for Calne Woman

    Monday, August 16, 2010

    Former project manager Bridie Nelson has spoken about life with a little known skin disorder, which left her in constant pain for almost two yearsThe 48-year-old from Newbury Avenue, Calne, was diagnosed in July 2006 with lichen planus, an itchy, non-infectious rash that can appear anywhere on the

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    Determined Star to Play for England

    Monday, August 16, 2010

    As he pulls on his England shirt for the fifth time, Dan English seems just a normal teenager living out his childhood dreamsSince he was nine years old, however, Dan has battled hard after losing his sight in both eyesNow the youngster is set to represent his country at international level, as h

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    Bridgewater Twins' Friends, Family Head to Falmouth to Raise Money for Medical Expenses

    Monday, August 16, 2010

    BRIDGEWATER -- Nine-year-old twins Alexia and Kailyn DeBoe, for the most part, have normal 9-year-old lives filled with dancing, cheerleading, the music of Justin Bieber and the junior soap-opera drama of “Twilight.&rdquo“Aside from the trip to Children’s (Hospital) every four we

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