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.

Friday, October 31, 2014

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!

Thursday, October 30, 2014

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


Thursday, October 2, 2014

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! 









Friday, June 27, 2014

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!




















Thursday, May 15, 2014

EB Awareness Bloomsday 2014

This year we did a Booster campaign to raise funds for Debra and bring awareness to EB. A little over $200 was raised for Debra from the Booster t-shirt campaign. Here are a few pics of us with our Team Sam shirts, it was a blast!





More Pics from Sam's Wish Trip

These were from the visit to the National Weather Center Norman, Oklahoma. 
                             Here Sam is looking at the dents in their vehicles from hail.

                                          New radar technology they are working on.







Saturday, April 12, 2014

Sam's Wish Trip

Everyone who knows Sam knows he loves tornados and the weather! Here are some pics from Sam's wish trip to Norman, Oklahoma where he got to meet storm chaser Reed Timmer! Sam enjoyed every minute of it!  Thank you Wishing Star!
 He is still praying to see a tornado though :)