Are you strong enough to be me? I have EB.: August 2015

Friday, August 14, 2015

Summer 2015

I was realizing I haven't uploaded any pictures in awhile! Sam has been enjoying the summer however it has been warmer than usual. With all the gauze Sam overheats fairly easy so we have been spending a lot of the summer indoors- looking forward to the fall!

Visiting family in Brewster for 4th of July

We finally had a cool day and went to hastings for a treat.

Sam with Surprise package from Aunt Patti and Uncle Ken

Time for Update!

We were successful in fundraising over our goal of $2,000 for Team EBRP. With the help of family, friends, and the wonderful people at PJS Pub we were able to raise $2,871! Just daddy ended up running the half-marathon --I found myself needing to be with Luka! Here are a few pics from Seattle- great experience!

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.