Sammy's new buddy- Bolt!

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!

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/

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.”

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!

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.

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!

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!

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.