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

Thursday, May 15, 2014

EB Awareness Bloomsday 2014

This year we did a Booster campaign to raise funds for Debra and bring awareness to EB. A little over $200 was raised for Debra from the Booster t-shirt campaign. Here are a few pics of us with our Team Sam shirts, it was a blast!

More Pics from Sam's Wish Trip

These were from the visit to the National Weather Center Norman, Oklahoma.

Here Sam is looking at the dents in their vehicles from hail.

New radar technology they are working on.

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.