Are you strong enough to be me? I have EB.: Sam in The Spokesman Review

Wednesday, November 20, 2013

Sam in The Spokesman Review

Sam was interviewed a few weeks ago by the Spokesman Review, here's his article. He was so excited when he saw the article! Check it out- so proud of our Sam!

http://www.spokesman.com/stories/2013/nov/14/eight-year-old-doesnt-let-genetic-disorder-stop/

1 comment:

UnknownNovember 24, 2013 at 1:07 AM
Fantastic article and great picture of both of you! Miss both of you.
Hugs,
Marissa Sullivan-Hein
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What is EB?

WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Our son Samuel has the Recessive Dystrophic form (RDEB). In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.