Why I ride
"This is the best day of my life"
How many times do you have the privilege of being part of the best day of someone's life? This is what Henry, a 16 year old from the midwest told me in March 2018. He was sitting on the back of my snowmobile high above the Fraser/Winter Park Valley. The video above gives you an idea of what Camp Spirit is for these kiddos.
You see, Henry has a blistering skin disorder, called epidermolysis bullosa (EB). EB, in its worst form which Henry has, means that the glue holding the layers of his skin together is missing. This means that the skin sloughs off at the slightest touch, and that blisters form further damaging the skin. It is like having a second or third degree burn forever.
Currently there is no treatment or cure for EB. All you can do is bandage the wounds, and keep them infection-free. This is an excrutiatingly painful process that takes hours each day. Yet other than this, these are normal kids, like every other kiddo.
There is hope and a light at the end of the tunnel for these children and their families. We have a research consortium with Stanford and Columbia that is testing a new form of therapy, using a patient's own skin cell to correct the genetic defect and heal the wounds. We are about to see a true breakthrough in medicine. Part of this research is funded by our EB Endowment.
By joining my Courage Classic ride, you help fund this type of research. You give kids like Henry the chance to go to Camp Spirit, a winter adventure camp for kids with EB. Last year 12 kiddos from across the country got to ski, go dogsledding and even snowmobiling! All with their peers and all with amazing volunteers who attend to their every need. And you provide assitance for these families struggling to cope with a child with this devestating disease. You help fund an endowment that funds research as well as family assistance. You bring hope where there has been none.
How often do you get to make the best day of someone's life? Please join me in supporting my Courage Classic ride with a gift to beat EB.
