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Saturday
Jun132009

Fallyn McNamara, a second-grader from Hempfield, PA, loves playing with her sisters, attending Girl Scout events, and trouncing her dad on Nintendo Wii. No matter what the activity, though, she must be extremely careful- even the slightest touch can cause painful blistering and break her delicate skin.

Fallyn was born with a rare and painful genetic disorder known as recessive dystrophic epidermolysis bullosa (RDEB). She, and children like her, are know as "butterfly children" because their skin (both inside and out) is as fragile as the wings of a butterfly. Fallyn's skin is so fragile that the simple act of walking frequently causes blisters on the soles of her feet; the seams of her clothes can rub her skin raw- even the soft fabric of her pajamas will cause wounds that take days, weeks, or even months to heal. She often wakes up with the neckline of her PJs stuck to the wounds on her neck it created.

Researchers at the University of Minnesota Children's Hospital, Fairview have been working on a potential cure for this previously incurable disease.  In late October 2008, Fallyn and her father (Frank) made the journey out to Minnesota to meet with the researchers.  After much discussion and testing, Fallyn became a candidate for clinical trials- her sister (Jennifer) is her bone marrow transplant match.  She has now started treatment and (as you can see from her father's blog) is doing well.  Although health insurance covers some aspects of the treatment, Fallyn and her family continue to needs YOUR help raising funds to cover the costs that other sources will not.

Without your generosity, this journey of hope for Fallyn and her family would not be possible. Thank you for your interest, time & support!!