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.
Dates for the 2018 Camp Spirit are
Sunday February 25th through Friday March 2nd
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. The incidence of EB is 1/20,000, so it is a relatively rare disease. It is usually diagnosed at birth since babies are often born with blisters and sores.
There are different types of EB depending on which layers of skin are involved; Simplex, Junctional, and Recessive Dystrophic. One of the most severe form is Recessive Dystrophic EB (RDEB). Children with EB are often called "Butterfly Children" because their skin is as fragile as a butterfly's wings. Internal organs may also be affected, and RDEB is life limiting. EB is a very expensive disease. Children and adults require specialized dressings that do not stick to the wounds and they must use power wheelchairs or scooters to get around because of pain when walking and contractures of joints.
The camp is operated in partnership with the National Sports Center or the Disabled (NSCD).
- Skiing on bi-skis
- Dog Sled ride
- Sleigh Ride and Marshmallow roasts
- Making new and lasting friendships
February 25th to March 2nd, 2018
Camp Spirit is Free to Participants
The camp is funded through the Children's Hospital Colorado Foundation, EB Family Assistance Fund. There are also some scholarships for airfare when needed by the campers.