Camp Spirit is a Colorado Winter Adventure Camp for children with one of the most severe forms of EB, Recessive Dystrophic. It was started in 2008 for children ages 9-18 to give them the opportunity to enjoy winter activities in a safe environment. It is located in Granby at the YMCA of the Rockies/Snow Mountain Ranch, in the beautiful Colorado Mountains.
1. Experience winter activities in a safe environment. Often children with RDEB are restricted from recreational activities due to fear of injury.
2. Enjoy camaraderie with children with a similar diagnosis. Since EB is so rare the children are often the only ones in their town or school. Here they can share thoughts, plans, ideas and fun with others like them.
3. Gain independence and the knowledge that they can advocate for themselves. This is often the first time the campers have had to help direct their care and learn what they can do for themselves. It is empowering.
"I didn't know I could change my own dressings" Ariana
EB is a genetic disease that affects the collagen (protein) that binds the layers of skin together. Children who are born with EB do not have the "roots and glue" that anchor these layers, and any trauma can create blisters and sores that are very painful and require daily dressing changes. They live in constant pain and are not able to participate in activities other children enjoy. The incidence of EB is 1/20,000, so it is a relatively rare disease.
There are different types of EB depending on which layers of skin are involved; Simplex, Junctional and Recessive Dystrophic EB (RDEB). Children with EB are often called "Butterfly Children" because their skin is as fragile as butterfly wings. EB is a very expensive disease because children and adults require specialized dressings that do not stick to the wounds, endure frequent hospitalizations, and often must use power mobility to get around. Frequently the children must be fed by G-tubes due to sores and constrictions in their mouth and esophagus and they suffer webbing of their fingers limiting their fine motor skills. Children with the most severe forms of EB are at risk for infections, anemia, and other complications. Although they live with constant pain, they have normal hearts and minds and an infectious spirit, and want to be like other children enjoying the activities that their friends enjoy.
IT IS CALLED "THE WORST DISEASE YOU HAVE NEVER HEARD OF."
The camp is sponsored by the Childrens Hospital Colorado Foundation, EB family Assistance Fund and the Butterfly Children Fund. and is free to participants There are some scholarships for airfare when needed by the campers.
"It was a life changing experience for me...Tony"