The Power of Summer Camps for Kids with Bleeding Disorders

The Power of Summer Camps for Kids with Bleeding Disorders

Camps for kids with bleeding disorders give participants a chance to bond with others facing similar struggles and instill confidence that they can take care of themselves. Bonus: There are activities from swimming to archery and horseback riding, too.
Author: James Langford

The National Hemophilia Foundation (NHF) celebrates its 75th anniversary in 2023. Throughout the year, will be commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NHF’s history.

From the beginning, Angellica Kelley knew that one time wouldn’t be enough.

Her first trip to a Michigan camp for bleeding disorders, made at the suggestion of a nurse after she was diagnosed with von Willebrand disease at age 11, had proven transformative.

Kelley made new friends, discovered other people like herself, and gained confidence in her own abilities. She wanted to go back.

Camp Bold Eagle, she says, “is magical. You’re in the middle of the forest with a bunch of people who understand your life struggles. We all had bleeding disorders, but in the outside world, I might never have met any of these people.” 

Which is one of the purposes of the camp and others like it. Here, children with bleeding disorders not only engage in outdoor activities synonymous with summer fun — archery, arts and crafts, swimming and canoeing — they do so while bonding with kids who have faced the same struggles. 

Campers also have access to round-the-clock medical care and, at many sites, learn skills like self-infusion with blood-clotting factor, a requirement for independent living.

Founded in 1969, Bold Eagle would become the first of many residential summer camp programs across the U.S. for people with bleeding disorders.

“I knew I would go there for as long as I could because it’s a whole different world,” Kelley recalls.

As long as she could turned out to be more years than Kelley could have imagined at age 11. At the time, she was more or less in the middle of the camp’s target ages, which run from 6 to 17. 

Just three years later, Kelley was eligible for Camp Eagle Outpost, a program designed for 14- and 15-year-olds that includes leadership training and prepares them to apply for counselor positions later.

“Safe to Be Myself”

Participants camp in tents at sites across Michigan, engaging not only in outdoor activities but discussions about the challenges that come with their disorders.

“There was never a doubt in my mind that I wanted to be a camp counselor,” Kelley says, “because I wanted to still come to camp forever.” 

After Camp Eagle Outpost, Kelley went on to become a counselor in training, or CIT, and then a counselor. Now in her 20s, she’s the associate camp director for the Hemophilia Foundation of Michigan, which operates Camp Bold Eagle and others in the state. 

“One of the things I really loved about camp is that I felt safe to be myself,” she says. “I felt safe to be goofy and dance around without a care in the world. It’s really fun now being able to see other campers coming in who are shy, looking around like, ‘Why are these people moving so weirdly? What are they doing?’ And by the end, they’re dancing with us.”

This summer, the Hemophilia Foundation of Michigan expects 230 participants in its seven summer camp programs, which include sessions geared toward families of people with bleeding disorders. 

All programs will be in person for the first time since the start of the COVID-19 pandemic in 2020, says Gwyn Hulswit, the foundation’s associate director. The organization ran a limited number of in-person camps in 2022 and operated virtual camps the two previous years. 

The majority of camps held by chapters of the National Hemophilia Foundation have a similar goal, the organization says: giving children with bleeding disorders a typical camp experience, one where possibilities, not limitations, are emphasized. Some simply provide a safe space for the rites of childhood that participants might otherwise miss, while others include health education.

Camp Wannaklot, run by Hemophilia of Georgia, does both. Participants learn more about their disorders while enjoying horseback riding, basketball, tennis, and other outdoor sports. The weeklong camp is divided into two groups, one for children ages 7 to 12 and the other for ages 13 to 17.

Some camps are known for their unique traditions. At Camp Tapawingo — operated by Pacific Northwest Bleeding Disorders, formerly known as the Hemophilia Foundation of Oregon — staff and counselors adopt camp names, says Executive Director Madonna McGuire Smith. 

Smith’s is “Magic,” a moniker awarded by an announcer when she was coaching high school and college sports. An employee of Gut Monkey, the company that designed the ropes course for Camp Tapawingo and works with programs for people with chronic health conditions nationwide, was dubbed “Big Dog.”

The custom begins with counselors-in-training, or CITS, campers who want to become counselors. They choose a name and announce it during staff training, then use it throughout the week of camp. 

“The little campers are always like, ‘What’s your real name?’ And we tell them we’re not using our real names,” Smith says. “It becomes a real challenge for them to figure out what the person’s real name is. It makes me laugh because the CITs were campers the year before and they knew their names then.”

Easing Parents’ Concerns 

The second-oldest camp for people with bleeding disorders in the country, Camp Tapawingo began in 1970 and now hosts two programs: one for children with bleeding disorders and their siblings and one for families.

Smith is uniquely qualified to help with the concerns of parents considering camp for the first time. Her own children have bleeding disorders and she experienced many of the same fears when sending her daughter to camp at age 8.

“She did OK being away from us, but I was more worried about her bleeding disorder and whether they would know what to do with her,” Smith recalls. “We didn’t even let her ride the camp bus; we actually drove her to camp, which was about three hours away. We decided that we needed to do that just to feel good about it, and that alleviated a lot of my fears.”

Often, the healthcare professionals staffing camps come from the nearest hemophilia treatment center and encountering them reassures both campers and their parents.

They realize that “the same people who know their disorders and know them are at camp taking care of them,” Smith says. “That really helps a lot with parents who feel the way I did.”

The established relationship also benefits kids learning to infuse, one of the major milestones at many camps. Smith’s 21-year-old son and 19-year-old daughter are now mentors for campers learning to infuse, or “stick,” a reference to the needle involved.

At the close of the yearly Oregon camp, participants who master that skill are recognized with a “Big Stick” award, a handmade wooden stick with their name burned into it.

“You can imagine that it’s not an easy thing to do to stick a needle in your own arm,” Smith says. But for children with bleeding disorders, it’s a crucial step toward independence.

“A lot of parents use camp as a way to get them the encouragement to take that final step and stick the needle in,” she adds.

Witnessing the satisfaction that campers feel when they master self-infusion inside Camp Bold Eagle’s med center is one of the best parts of the annual experience, says Kelley, the associate camp director in Michigan.

“I’ve had campers who went in by themselves, and if I hear about it while they’re still inside, I’ll run over and encourage them even more,” she says. “The magic of Camp Bold Eagle is really hard to describe, but as soon as I get there, it’s like I’m back home. We have families who have sent their kids there for years and years, and I know a lot of people who owe a lot to camp for their growth and happiness.”