Hayden Esser, EB Fund

To all Hayden's family, friends, loved ones and supporters:

Our son Hayden was diagnosed back in February when we traveled to Minnesota for a skin biopsy to see what type Hayden has which is Dystrophic Epidermolysis Bullosa (DEB) and see if we could possible have a Bone Marrow Transplant done for Hayden which still doesn's guarantee a hopefull ending. Dystrophic EB affects approximately 1 in every 20,000 newborns per year. It is also known as the "scarring type"; as Hayden's blisters heal, they may cause severe scarring. Typically, blisters are present over the entire body, including the mouth and digestive tract.

At the simplest level, DEB results from a mutation in the gene that makes collagen 7. Collagen 7 is the main component of structures called anchoring fibrils, which anchor the top layer of skin to the bottom. Without these fibrils, friction, or other minor trauma like holding or feeding, can cause Hayden's two skin layers to separate. This separation leads to the formation of blisters. Our most effective treatment at this point is to prevent friction and the formation of blisters, and to appropriately dress blisters so they heal. We are also on a clinical trial for a topical cream hopefully it helps!

Many of you have asked what you can do to help.

At this point, we are fundraising for both Hayden's current and future needs. We do not know what the future will bring, but there is promising research in Minneosta that we looked into but decided to wait and see how his quality of life goes.

The last 11 months have been an emotional, life changing journey, teaching us to fully embrace the statement "take one day at a time". Nothing is guaranteed and treasuring the happy, positive moments is a MUST. Hayden will face much adversity in his life, To all Hayden's family, friends, loved ones and supporters:

With your help and ours, Hayden's dreams will come true. Our goal, our "dream", is that our handsome young man will live a life full of confidence and strength; most importantly, that he learns to own his condition and prove this disease wrong and never fear life!

Happiness and smiles are contagious, and if we can make our dream for Hayden come true, our lives will be everything we've always wanted for our son. Please consider donating and sharing.
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