Are you strong enough to be me? I have EB.

Tuesday, October 30, 2018

EB Awareness Week 2018

When we first created this blog Sam's grandma gave it the name "Sammy's waiting" relating to Samuel waiting for a cure. Although this is still true, there is no cure and we are desperately waiting, we are incredibly closer to a cure than when he was first born. Over the past several years there have been many new trials and studies in the works coming closer to an effective treatment or cure for EB. Thanks to organizations such as EBRP (EB Research Partnership) and Debra, awareness and fundraising may lead to a cure in Samuel's future. We are hopeful that he and others will know what it's like to live closer to a "normal" and pain-free life someday.

Here are some highlights of 2018!

Sunday, October 29, 2017

The Butterfly Effect

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!