Are you strong enough to be me? I have EB.: December 2016

Wednesday, December 14, 2016

Sam Christmas Surprise from 92.9 ZZU

Today we had a special Christmas surprise from 92.9 ZZU!

Aunt Angie sent a sweet letter to the station and they brought us a ton of cool gifts! Sam and Luka were super excited of course :) What a blessing !

dkmshow.com/angela-and-julios-christmas-wish/

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.