This year I turn 18, start my senior year of high school, participate in my first medical trial and ride the Courage Classic for the second time. All of these events are important in different ways and all of them are huge accomplishements for someone with Epidermolysis Bullosa.
Im the oldest of 7 children, 4 of us have the Recessive Dystrophic form of Epidermolysis Bullosa. Because of this disorder we all have very fragile skin, endure hours of daily bandage changes and multiple surgeries each year. We fight hard and we play even harder.
Riding the courage classic for the first time a couple of years ago with my Dad was a powerful experience. I learned how good it felt to accomplish my goals and do something I had never done and don’t think possible . It was the first time I took the opportunity to give back to Camp Spirit, the incredible winter camp for kids with EB. It’s a special experience to go to Camp Spirit and I shared this experience in February with my younger sister Jayne. We skied, made friends and surrounded ourselves with people who live with EB daily. It’s an experience that you only find at Camp Spirit.
I know times are hard for everyone. I’m asking for support in this ride to be able to give people the hope of looking forward to better times. EB isn’t going away and myself and my siblings and friends with EB need the experiences provided by Camp Spirit.