Are you strong enough to be me? I have EB.: February 2014

Wednesday, February 26, 2014

Wish Trip

Sam found out Monday that we will be going to Norman, Oklahoma in April for his wish trip through Wishing Star! Sam is very into tornados and storm chasing and his trip will be related to these interests. He is very excited!

Wednesday, February 5, 2014

Wishing Star Event: Taste Spokane

Sam will be the featured wish kid at Taste Spokane, a fundraiser put on by Wishing Star. Tickets are available online - check it out!
www.tastespokane.com

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.