Gunner has a very rare, (1 in every 20,000 births) genetic skin disorder called, Epidermolysis Bullosa, or “EB” for short. Those with EB are missing in their DNA, the protein that holds the skin onto the body called collagen VII. This means with any friction, trauma, heat, etc his skin comes off (shears) leaving a deep wound and/or blister. This happens on the outside of the body as well as the inside. Wounds heal with scar tissue, causing deformities and fusing of the hands, fingers, toes, and other body parts that require surgical intervention.
There is currently no cure for EB, with Gunner’s type, life expectancy ranges from early teens-early adulthood. The only treatment is to cleanse his wounds and wrap his body from the neck down to protect his wounds from infection. This is a very painful, long process. Because EB is so rare, the closest specialists to Gunner are at The Children’s Hospital Colorado in Aurora, CO. We travel there every 6 months, and have since he was 4 months old. Gunner requires esophageal dilations to open his throat to allow him to eat every 4-6 months requiring anesthesia. Along with the dilations, he requires labs, iron infusions, EB clinic check-ups, and other various surgeries and testing. While EB is a “skin” disorder, you will find that it affects much more than just the skin, and causes a very low quality of life.
We are are raising money today, to be able to give back to the smaller organizations that help those with EB and their families. The two organizations chosen are very special, and help Gunner’s family specifically, often.
The Butterfly Fund.
-The Butterfly Fund is a small non-profit organization that helps EB families in many different ways throughout the year. Primarily, they help with costs of Christmas by supplying gifts during their Secret Stocking Project each year for the medically fragile child and their siblings as well. They also remember the children on their birthdays. Throughout the year, they post the families amazon wishlists so that followers can buy from them and send directly to the medically fragile child’s home. Laurie also makes frequent purchases from the lists often as well. Laurie & The Butterfly Fund were Gunner’s family’s first point of contact to the support of the EB community. We’ve been with them for 7 years now, and they have made us smile (and taken so many burdens from us) more times than we can count.www.thebutterflyfund.org
The EB Fund through Children’s CO
The EB Fund at the EB Clinic at Children’s Colorado Hospital in Aurora, CO has been helping our family with costs for travel, food, and lodging since Gunner started as a patient. (At 4 months old). Every single person in the hospital knows about EB, and knows the precautions to take to ensure safety of their EB patients. Since they are safest with Gunner’s skin and internal involvement when he has to undergo anesthesia and surgeries, we seek all care there. This requires frequent trips to Colorado from our home in Oklahoma. The EB Fund has been there to help our family absorb costs from the frequent trips. This makes a very stressful, and long week of appts and travel much less of a burden to us. We are so happy to be able to give back to them so that they may continue the blessing of helping more families with EB and the stress of traveling and arranging the visits for their child with EB. www.childrenscolorado.org
If you have made it this far, THANK YOU, from the bottom of our hearts. It’s so important to us to be able to raise awareness and give back. Gunner is such a happy, funny, guy and does not let EB define him in any way. It means even more to know that we have a team behind us to help. God Bless!