Are you strong enough to be me? I have EB.

Tuesday, October 29, 2013

Thanks to my sisters we have raised some awareness by selling these cute stress balls at the Grand Latte coffee stand we work at. We appreciate all the support and donations our customers have provided!

2 comments:

KoriOctober 30, 2013 at 10:55 AM
We raised about $700 so far just at the coffee stand!! :)
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UnknownNovember 24, 2013 at 1:01 AM
Awesome! Where is the coffee stand so that I can come by and donate?
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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.