EB is a genetic disease which is often called, “The worst disease you have never heard of”. Children with EB do not have the collagen/protein which binds the layers of skin together, resulting in a lifetime of sores, pain, disfigurement and physical limitations. They are referred to as “Butterfly Children” because their skin is as sensitive as butterfly wings. It is a rare disease, affecting approximately 200 babies each year. Even though they have a shortened lifespan filled with pain, children with EB have an indomitable spirit. The Butterfly Children Fund is dedicated to improving their lives through insuring they have their medical, physical and life needs met, and through giving them the amazing experience of Camp Spirit. Our team has been fundraising for the Epidermolysis Bullosa (EB) Family Assistance Fund, Endowment Fund, and Camp Spirit through the Children’s Hospital Colorado Foundation for many years. In 2016 we formed the non-profit Butterfly Children Fund Corp. to enable us to expand our fundraising abilities.
Epidermolysis Bullosa is a very expensive disease. It requires specialized dressings, power mobility such as wheelchairs and scooters and frequent hospitalizations. Daily constant care consists of baths and dressing changes, tube feeds, medications, monitoring by Physical and Occupational Therapy, a nutritionist, frequent transfusions to counter anemia, and many other interventions. Because it effects all epithelium, external and internal, the children need frequent dilations of their esophagus because of scarring and encounter frequent corneal abrasions. Often one parent cannot work, because of the amount of care involved. The funding of the EB Family Assistance Fund is so important to help meet these needs as well as the flights and lodging needs for out of state patients who come to the Children’s Hospital Colorado Clinic.
Camp Spirit was started in 2008 to give children with Recessive Dystrophic EB (one of the worst forms) the experience of winter activities in a safe environment and the opportunity to be around other children like them. The Butterfly Children Fund is the sole fund raising source for the camp. We feel that the experiences gained here have a life long impact on the children encouraging independence, advocacy, and the realization that their disease does not have to preclude fun and adventure.