Are you strong enough to be me? I have EB.: More about Sam

Wednesday, October 2, 2013

More about Sam

Sam just turned 8 years old and continues to amaze us with his strength every day. His main interests now are soccer and the weather! Sam loves science and especially loves learning about tornados. Sam's daily routine includes checking weather radar for developing storms. As for soccer, Sam loves playing and works on his foot skills often, no matter how his feet feel! He is a Seattle Sounders and Real Madrid fan.

1 comment:

UnknownNovember 16, 2013 at 1:53 AM
I can not believe you are now 8! You are getting so big. I see you are still the handsome charmer I was blessed to have in my class. Know that I miss seeing both you and your Mom at school. I think about you often and you turned me into a soccer fan. Go Manchester United!
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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.