By Mindy Stone; courtesy photo

Overnight camp gives children an opportunity to try new activities, make friends, and build self-confidence and independence. For children suffering with epidermolysis bullosa (EB), a rare genetic skin disorder, they get a unique opportunity to attend a special camp in Granby at the YMCA of the Rockies/Snow Mountain Ranch with other children like them.

“They’re just normal kids. They want to play. They don’t understand, particularly when they’re younger, why they can’t do something,” said Philanthropy Fellow Les Lee of Children’s Hospital Colorado Foundation.

The Colorado Winter Adventure Camp is for children ages 9 to 18 with recessive dystrophic EB. The 2022 Camp Spirit will be held at the end of this month. Campers get to go skiing through the National Sports Center for the Disabled, dog sled riding, sleigh riding and snowmobiling. They participate in evening activities including crafts, games and music.

“For the first-timers, this is usually the first time they have been away from home without their parents,” said Lee. “It’s a huge step in terms of independence. They learn that they can make their life more normal through these experiences.”

Kids from all over the country attend Camp Spirit in the Colorado mountains. The camp is free to participants and is funded through the Children’s Hospital Colorado Foundation EB Family Assistance Fund. Castle Pines residents Todd and Kristen Narlinger, owners of Madison & Company Properties, help raise money for the charitable cause (see related story page 29).

“Learning about this disease that I never heard about spoke to me because we have children,” said Kristen.

Madison & Company has become the main sponsor of Birdies for Butterflies, a biennial charity golf tournament and silent auction event benefiting the Children’s Hospital Colorado EB program.

“This is a program that I have taken a special interest in because I have known and know so many of these kids. They have this horrific disease. They live in pain 100% of the day; rarely do they live into adulthood. Right now, there is no treatment or cure,” said Lee.

Nearly $65,000 was raised at the 2021 golf tournament at Pinehurst Country Club in Denver.

“We were blown away,” said Kristen. “Literally, we sold out within a month of putting all the foursomes on sale. A lot of them were our agents at Madison or any of their clients, neighbors, friends and even family members.”

EB is also known as the “Butterfly Syndrome” because the children’s skin is as delicate as a butterfly’s wing, the namesake of the golf tournament. All of the money raised helps pay for children to attend Camp Spirit. Children with severe cases need hours of bandaging and wound care each day. Everyone on the camp staff is familiar with EB and is able to do dressing changes. They can handle any medical issues that arise.