We understand that this is a leap of faith. Given this is often the first time you will be separated and trusting someone else with your child, we understand you might be nervous. Rest assured, we have been doing this for 15 years and the children are in good hands.
Camp Founder, Kaycie Artus, has a special place in her heart for these children and she brought her vision for Camp Spirit to life after taking one girl with RDEB to Winter Park, CO for a fundraiser. Seeing what fun she had skiing, she decided that children with RDEB should have the opportunity to experience winter activities in the company of other children like them. Kaycie is a physical therapist who has worked with children diagnosed with EB since 1980.
The Camp Staff includes a unique mix of volunteers to meet the needs of the campers including:
This well-balanced team are very familiar with EB medical care including dressing changes and feeding tube protocol. They create a fun and supportive environment so the campers can feel comfortable away from home and their families.
Camp is located in Grandy, CO with lodging at the YMCA of the Rockies-Snow Mountain Ranch.
We have our own large cabin where each bedroom has its own bathroom. There are wheelchair accessible rooms, and a large kitchen where we can cook your camper’s favorite foods and meals.
Special Camp For Kids Living With ‘The Worst Disease You’ve Never Heard Of’
It’s called Camp Spirit and it’s for people suffering with Epidermolysis Bullosa, or EB, a rare skin disease.
The Colorado Winter Adventure Camp is for children with one of the most severe forms of EB, Recessive Dystrophic.
“It’s the best week of every year. We get to do all sorts of amazing activities, it’s really empowering”.
“It’s a hard life, but it’s still a life. Just the fact we’re here, the fact we’re alive, the fact we have friends and family and have amazing experiences like this is worth all the pain and suffering we have to go through”.
Campers and counselors we spoke to said the camp not only gives kids suffering with EB a week to remember, but allows them to build friendships that last forever.