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!

The Butterfly Effect

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!

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/

EB Awareness Week- October 25-31

Sam Diaz-EB Awareness Week 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

                                         

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

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!

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!

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!

Last Thoughts EB Awareness Week 2014

     For the last day of EB awareness week I thought I would share some photos of Sam’s wounds and daily supplies and describe what he typically goes through every day dealing with EB. On bath and full change days Sam soaks until his gauze can come off without pulling on wounds, then removes gauze (by himself now), soaks again in new water, and then washes wounds with our help. Once this is done the skin is moisturized, blisters are drained, ointments are applied, and wounds are dressed with new gauze. The length of this process can really vary depending on severity of wounds but typically takes at least 2 to 3 hours from bath soak to new gauze being finished.  Every day, no matter whether it is a full change day or not, Sam must go through gauze patch ups, application of ointments, blister draining, eye care (a newer issue for him), intake of daily medications and vitamins/supplements (nutritional needs). For Sam the external wounds are most definitely not the most painful part of EB, the internal wounds in his mouth and throat are by far what cause him the most discomfort.

As much as I prefer to emphasize Sam’s strength, the fact is EB is a horrible life threatening disease and it wears on him everyday. We have hope that someday there will be a cure for those who suffer from EB but for now we need to help spread awareness to fund current promising research.

 No this is not the face he has during his whole bath and gauze change but he still manages to smile at times during the process and is great at finding ways to distract his mind by talking about the weather or watching his favorite shows.

 Various medications and supplements Sam must take every day to stay healthy.

 The typical wound supplies we use for Sam every day.

 These pics of Sam's feet are a little graphic but they show the wounds he deals with every day. Sam absolutely amazes us when he pushes himself to do things he loves like play soccer!

EB Awareness Week October 25-31 2014

Every year the last week of October is EB Awareness week. This year Samuel's aunt Angie helped by making beautiful butterfly earrings to sell to friends and family. We will be donating all funds raised to EBMRF this year.

Please learn more about EB and how you can help at the following sites:
www.ebkids.org
www.debra.org
www.ebresearch.org

Determination

Sam joined a soccer team again this year with cousin Damian. They are having a blast!

We are so proud of Sam for his determination to do those things he loves despite EB. 

He has so much passion for soccer and practices constantly to improve his skills!