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.

Thursday, October 26, 2017

Repost: Sam Diaz-EB Awareness Week Video

Sam made this video last year for EB Awareness Week so I thought I would share it again this year. He did a great job talking about living with EB!

2017- Catch Up

It's the time of year I try to make sure I have updated Sam's blog during EB Awareness Week! Sam is now 12 and becoming an amazing young man. EB has definitely taken a toll on Sam's body and mind over the  years however he fights to stay strong and enjoy his life. We are so proud of him and the effort he makes to persevere through the challenges he faces every day.

 This year Sam was able to go to the Stanford EB Clinic for the first time which was a great experience. The trip down to California was also a fun family time!

 Sam having some summer fun!

 Sam  supporting his Aunt Kori at her CD release show.

 2017 Good Guy's Car Show, Sam loves nice cars!

 Sam started a new school this year, Pride Prep. He is already in 6th grade and we are so proud of him!

 We surprised Sam with tickets to the Gabriel Iglesias comedy show for his birthday!

Aunt Naly made Sam an awesome tornado cake for his 12th birthday!

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 !


Wednesday, August 31, 2016

For Sam, just like most individuals with EB, bath time is a very painful experience and causes him quite a bit of anxiety. Sam has much deeper, larger, chronic wounds at this age than he did a few years ago and battles infection more than before as well. A few times a week Sam has to soak his bandages off, clean his wounds and rebandage. The whole process takes 2 to 3 hours depending on how it goes and how his wounds are. For awhile now we have been considering a bath remodel to provide Sam with a more therapeutic tub for his wound care. After hearing great results from another EB family, we have decided to move forward with the installation of a specific tub made by Jason International which provides a technology that will be beneficial to Sam and his wound healing process, and hopefully make bath time more enjoyable as well! We will need to do a remodel of the bathroom and it will be costly, so Julio has started a fundraiser in correlation with the marathon he will be running in October. Any proceeds generated will be put towards this project for Sam. Thank you in advance if you are able to help, anything is greatly appreciated! Thank you for taking the time to learn about our Sam and what he deals with.

For more information about the fundraiser or to donate visit: www.crowdrise.com/juliodiaz2