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, 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 !




dkmshow.com/angela-and-julios-christmas-wish/

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




                                         

Tuesday, August 30, 2016

Summer 2016 Update

Sam had the opportunity to attend Camp Wonder in California this past June and he loved it! Camp Wonder is a camp run by the Children's Skin Disease Foundation and invites children with all types of skin diseases to enjoy a week of fun. We are so grateful that he was able to have this experience and he is looking forward to attending again next year. Sam had a great summer and is ready to begin 5th grade! We are so proud of him!



www.csdf.org

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!