Are you strong enough to be me? I have EB.: December 2013

Saturday, December 28, 2013

Sammy's new buddy- Bolt!

Friday, December 6, 2013

Weather station tour

Sam had a chance to tour the National Weather Service station in Airway Heights the other day, he had a blast! He got to let off the weather balloon and check out all the cool radar on their computers.

Fun time!

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.