Just days after Jackson Silver was born on Oct. 11, 2007, his parents' joy was replaced with horrorAs the nurse gently removed the bandage from the baby's left heel -- where blood is routinely drawn at birth -- a large patch of skin came off with itJackson was diagnosed with epidermolysis bullosa

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More than $10,000 has been raised for a Woodbury family’s new disease research foundationPioneering Unique Cures for Kids (PUCK) is wrapping up its first major donation drive, which was part of a Children’s Cancer Research Fund 10K raceLonni Mooreland said Team PUCK raised $10,475 for

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STATEN ISLAND, N.Y. -- Every other day, 8-year-old John Hudson Dilgen must endure an excruciating 90-minute bath in bleach or vinegarThen, the special bandages from Sweden that encase most of his body — that without insurance would cost $500 a day — are changed. The several hours of wo

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NEW BRITAIN — Paul Krish is a vital member of the New Britain Rock Cats.He doesn’t score runs, he doesn’t drive in runs, he doesn’t prevent runs. He makes runs, that is, runs from city to city around the Eastern League as the team’s bus driver.

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Her arms and legs wrapped in bandages, the child smiled down at the personalized jewelry dangling from her neck.Six cubes the size of dice spelled out her first name.Hannah York has lots of pretty necklaces — more than a half-dozen long strands of glass beads in assorted shapes and colors. The 6-year-old Granbury girl sat on the carpet at her grandmother’s home in Fort Worth happily…

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Leena Bruckner-Tuderman from the Department of Dermatology at the University Medical Centre in Freiburg has just been awarded the Eva Luise Köhler Research Prize for Rare Diseases.

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She’s one of the country’s Butterfly Children because her skin is so delicate. It may shear off and blister under the gentlest touch, but Lauren Rogers is determined not to let her condition ruin her life.From birth, the plucky youngster from Denbigh has battled with rare disease Dystrophic Epidermolysis Bullosa (DEB).She has to be careful of her every movement because the slightest…

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With a pillow over his arm, Frank McNamara lowered his 6-year-old daughter onto her back and lifted her from a mattress. The pillow protected Fallyn from rubbing against her father's arm, ring or watch.Fallyn was born with recessive dystrophic epidermolysis bullosa. The condition renders skin so fragile that the slightest rubbing or scratching can cause blistering. Play activity and even the…

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Students are lining up before school, money in hand, to buy Valentine's Day cards.But these aren't just any Valentine's Day cards. They're designed by Espy third- and fourth-grade students, and all the proceeds go to benefit one of their own.Keric Boyd can't play sports like other kids his age. He can't go down slides or play in the sand box. He can't wrestle or play rough like most 6 year olds.

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