Special Camp For Kids Living With 'The Worst Disease You've Never Heard Of'

GRAND COUNTY, Colo. (CBS4) - In the Colorado Mountains, there is a camp where for one week, kids with a rare disease can get away and just be kids. It's called Camp Spirit and it's for people suffering with Epidermolysis Bullosa, or EB, a rare skin disease.

It's been called the worst disease you've never heard of.

"They generate these sores due to basically the fragility of their skin. It creates blisters, large sores that are chronic and they don't really have the capability of closing them. Most of the time they're wrapped head to toe," said volunteer camp counselor Jon Leines.

Kids come to Camp Spirit from all over the country and not one of them pays a dime. The Colorado Winter Adventure Camp is 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.

Henry DeAngelis is 18 years old and from Des Moines, Iowa. He's been coming to Camp Spirit for several years.

"It's the best week of every year. We get to do all sorts of amazing activities, it's really empowering," he told CBS4's Dominic Garcia.

On Sunday campers were taken out to Dog Sled Rides of Winter Park, safely strapped in, and taken on 45 minutes rides.

"I'm super excited because dog sledding is my favorite," said 11-year-old camper Ella Murray.

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.

"They have this sense of resilience and strength and you get this perspective that impacts you immediately. That's the cool part of this camp, you lose that fear. They're strong, they're stronger than any of us. They take this head on and they accept what they have but it's not who they are," said camp counselor Jon Leines.

We asked Henry DeAngelis what gives him the courage to keep going, his answer was a message for everyone.

"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".

LINKS: Camp Spirit | Dog Sled Rides