What is EB?

WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Sammy has the form called Recessive Dystrophic. 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.

Wednesday, October 30, 2013



EB Awareness Night at Brewster High School!
Samuel's aunt Naly helped organize an awareness night at their girls volleyball game. All three of their teams wore green (Sam's favorite color) to support Sam. They also sold cupcakes and EB awareness bracelets to help raise money.  Great job Naly! We appreciate everything friends and family are doing to help spread awareness this week.








Tuesday, October 29, 2013


Thanks to my sisters we have raised some awareness by selling these cute stress balls at the Grand Latte coffee stand we work at. We appreciate all the support and donations our customers have provided!

Thursday, October 10, 2013



Sam enjoying some soccer time with mom and dad. He would pretty much always rather be outside playing soccer than sitting on the couch- no matter how his feet are doing! His ability to get through pain to do what he loves seriously amazes me!

Wednesday, October 2, 2013

More about Sam

Sam just turned 8 years old and continues to amaze us with his strength every day. His main interests now are soccer and the weather! Sam loves science and especially loves learning about tornados. Sam's daily routine includes checking weather radar for developing storms. As for soccer, Sam loves playing and works on his foot skills often, no matter how his feet feel! He is a Seattle Sounders and Real Madrid fan.