Children run. The innocence, energy, and boundless enthusiasm of childhood is embodied in the simple act of pushing off and pumping those little legs as fast as they can. Some fast, some not so fa
st, but all children run.
My two and a half year-old son Ermias will never be among them. He suffers from epidermolysis bullosa, a rare affliction that renders his skin and connective tissue unbearably fragile. Even the gentlest touch leaves painful blisters. For him, every day is a gauntlet in which every surface is an unavoidable injury. Needless to say, running is out of the question.
There is only so much my wife and I can do for him. At the end of each day we nurse his many blisters, which must be lanced, drained, medicated and dressed. We try to make his life as free from pain as we can, b
ut that’s difficult when the entire world is a weapon, aimed straight at him.
I want to do more. I want this terrible disease to go away, both for Ermias and for the other children who suffer as he does. The only way that can happen is with continued research and study, which must be funded.
I’ve never run more than a few miles at a time in my life (when I ran!), but there is no awful disease stopping me. I have no excuse. I’m going to run the Rock ‘N’ Roll Half Marathon in June to raise money and awareness for the EB Research Partnership. Because I can and Ermias can’t. Because my love as a father can only do so much. Because we need help to beat this thing. I’m joining Team EBRP (EB Research Partnership) to fight the fight!
Learn more by checking out my Crowdrise page here. You can also follow along on twitter by searching #EBRun4Ermias.
Thank you for your support!