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.

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!

Wednesday, November 20, 2013

Sam in The Spokesman Review

Sam was interviewed a few weeks ago by the Spokesman Review, here's his article. He was so excited when he saw the article! Check it out- so proud of our Sam!

http://www.spokesman.com/stories/2013/nov/14/eight-year-old-doesnt-let-genetic-disorder-stop/

Sunday, November 10, 2013

http://fxn.ws/1dRVs4X

 Here is a link to another article about a child with EB (same form as Sam's). Dr. Jakub Tolar gave a great description of how to explain what EB is. EB is so rare it is sometimes hard to explain to others exactly what is wrong with the skin, this is a simple way to explain it.

“(Collagen) is like a glue,” Dr. Jakub Tolar, director of the University of Minnesota Stem Cell Institute and an associate professor in the department of pediatrics at UM, told FoxNews.com. “We have several layers in the skin, and the two main layers – the dermis and the epidermis – are literally glued together like Velcro with loops of this collagen.  If you don’t have it, you will lose the surface of the skin, and that’s what these kids have.”

Thursday, November 7, 2013

http://www.thedoctorstv.com/videolib/init/10096

The show "The Doctors" had a special this week on another boy with EB, same form as Sam. Check out the link!

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.