Summer camps build confidence and critical life skills that last a lifetime for children and teens with bleeding disorders.
At the North American Camping Conference for Hemophilia Organizations (NACCHO), camp organizers from around the country gather annually in Tempe, Arizona, to exchange resources, techniques, and new ideas. Hosted by the Arizona Hemophilia Association, the event features presentations from medical experts and national leaders in the blood disorder community.
There are more than 1 million people affected by bleeding disorders in the U.S. and more than 50 camp programs nationwide for kids and families. Bob Graham, director of the New York State Bleeding Disorder Family Camp, explains that such programs feature many of the same activities and challenges of a traditional summer camp, but with the added benefit of medical staff and trained counselors on-hand who ensure a safe environment.
When he began this work 25 years ago, at the height of the AIDS and hepatitis epidemics, Graham says that children with bleeding disorders had a vastly different quality of life. “Now that we have safe treatments that are widely accessible, we’ve adapted our focus to teach kids about character, life skills, and how to live normal lives.”
“You’ll see mainstream activities at our camp,” says Graham, “but we want the kids to learn how to participate in traditional sports and games safely.” Through basic care sessions and discussion groups, older teens mentor younger campers about managing their bleeding disorder. “When you’re 12 years old and look like everybody else, the kids wonder why they need to do these things,” says Graham. “But when they talk to older kids who can relate to them, they learn in a much more meaningful way why it’s important to do what doctors and nurses and parents are telling them. The complications from an injury could change a lot of future plans if they’re not careful.”
Graham, who was a speaker at this year’s NACCHO event in January, says conference attendees talked about how to prepare their campers for 10, 20, and 50 years in the future. “We’re selecting and training staff that are not just caretakers but also role models. How they conduct themselves can have a life-changing effect on kids.”
Graham and several of his family members have bleeding disorders. “When my step-son was growing up, it was really difficult. He was a ‘bubble kid’ wrapped in padding and helmets and not able to do much because he would invariably get hurt.” At camp, he met other children doing things he was afraid to do or had not been able to try. Graham says that experience was eye opening for his step-son, who became eager to learn new things. “Now he’s an Eagle Scout, talking about going on cross-country hikes and helping the community. He’s been successful because of what he learned at camp.”