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, 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!





Tuesday, March 31, 2015

Team EBRP Seattle Rock n Roll Marathon

We are excited to say this June we will be running the half marathon portion of the Seattle Rock n Roll Marathon on Team EBRP. EBRP stands for EB Research Partnership, an organization dedicated to spreading EB awareness and funding a cure. Many individuals have run in other races across the country for Team EBRP in order to raise money for EB research. To learn more about EB Research Partnership visit www.ebresearch.org As part of Team EBRP we are fundraising with a goal of $2,000.

To visit our crowdrise site and donate visit www.crowdrise.com/2015seattlerocknrollmarathon/fundraiser/allisonjuliodiaz

Thank you for your support!



Sunday, March 15, 2015

Big Brother

It's been awhile since we have updated Sam's blog and we have exciting news! On February 22nd Samuel became a big brother to Luka Skye Diaz :) Samuel is a great helper and is in love with his little brother!