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! 

Pilot for a Day!

Sam was invited to participate in the "Pilot for a Day" program with the 141st Air Refueling Wing at Fairchild Airforce Base! Here are some pictures from the day, it was absolutely amazing! We are very thankful to everyone who participated and made this day extra special for Sam!