Kids Managing Chronic Illness Experience Connection at Specialized Camps

To live with a chronic medical condition is a battle against feeling powerless and alone, especially for a newly-diagnosed child. There is a group of tenacious organizations determined to not leave these kids and their families in isolation.

Every year, nonprofits across the United States offer the opportunity for thousands of children living with diabetes, hemophilia, and other chronic medical conditions to go to summer camp. Staffed by experienced healthcare providers and trained counselors, these camps offer disease management education while at the same time providing traditional camp activities like swimming, hiking, ziplining, and team sports where children can come together to have fun.

Character building and fun go hand in hand

Camp leadership and staff are also focused on empowering each camper and providing opportunities to build the character needed to look up from their health frustrations and out towards their community.

Dr. Ernie Fernandez, the medical director of Camp Sweeney, one of the oldest diabetes camps in the country located an hour and a half north of Dallas, Texas, shared about why type one diabetes is particularly frustrating.

“With all the new technologies that are available today, you would think it’d be super easy to take care of type one diabetes. But let me tell you, as somebody that’s done this for almost 40 years, you can have every new thing… and everything is still just as variable.”

Dr. Fernandez described how with this chronic condition, a person’s body stops making insulin, but it also stops making several other hormones that aren’t replaced via injection. So even when kids diligently monitor their blood sugar levels, take it slow, and eat a fixed amount of carbs at each particular meal– in other words, do all the right steps– their blood glucose level, and how they are feeling as result, is always going to be different. And it’s incredibly frustrating and so easy to feel unwarranted guilt.

So one of the practices that camps employ is creating space for affirmation for each other and celebration of learnings. Dr. Fernandez shared that the campers at Camp Sweeney do this through daily “virtue circles.”

“Kids stand up,” he explained, “And they’re recognized for some of the things that they did that were virtuous, things that they really do possess. And they are affirmed for that, they get little beads that they earn for that. And day in and day out, their kids get better and better about recognizing that in each other, and they started recognizing virtue in themselves.”

Megan Castellano is managing director of camps at the American Diabetes Association, which this year ran 33 different camps across the United States. She was able to go visit five of those camps this summer and believes the deep friendships, the kind that include giving and receiving accountability, are one of the camps’ key distinctives. “If someone’s pump site falls off, they’re like, ‘Hey, I need two friends to go with me to the Med Center,’” she said. “So [each camper] knows the camp rules and the safety they bring. Their friends aren’t like, ‘Oh, well, I want to stay at the water.’ Like they’re like, ‘Okay, pack up, let’s go.’”

Collective empowerment is also the goal of the Painted Turtle, a specialty condition camp in California that welcomes kids with over 120 different conditions, including hemophilia. Hemophilia, a bleeding disorder in which the blood does not clot properly, can lead to spontaneous bleeding as well as bleeding following injuries or surgery, so kids have to learn how to inject themselves with the missing blood clotting proteins (factor VIII or factor IX) so that the blood can clot properly. Michelle Melendez, health center director of the Painted Turtle, shared it’s a “big deal” when a camper can master this technique, a multi-step process that includes reconstituting their factor, putting a tourniquet on themselves, finding a vein, then administering the factor via injection.

“For many of [these kids], they can’t really go overnight, anywhere, if they don’t know how to self infuse, or if there isn’t somebody there that knows how to infuse their factor,” she explained.

“If we have a child at camp that is able to do everything from start to finish on their own independently, we call it the big stick award,” she said. “They literally get a big stick that is decorated by the oldest campers who also learned how to self infuse at camp. So the oldest boys will decorate these sticks, we make a certificate, and then after dinner that night, we celebrate it in the whole camp cheers them on. They get put into a big chair and pushed around in a circle and then they get awarded their big stick. Last year, we had 11 boys and 2 girls learn to self-infuse at camp.”

camps face organization-level Challenges

While campers have their own unique obstacles to overcome, running these complex camps comes with challenge as well, including heat waves and lingering effects of Covid-19.

Florida Diabetes Camp is a nonprofit that typically runs six different diabetes camps across Florida every summer. This year, however, the consistently high temperatures meant that the number of campers was lower at two of the camps, according to Gary Cornwell, the organization’s executive director. It also forced his team to cancel the cycling camp, where teens bike an average of 20 miles a day and sleep in tents as they go. “[It’s] something we don’t like doing,” Cornwell said. “But you can’t put a kid on a bike and ride that many miles out in the hot sun every day.”

Also, this is only the second summer that camps have been open, post Covid-19 pandemic, but the two years (2020 and 2021) of either no camp or virtual camps still have had a lingering effect on participation for some camps. Melendez said that both recruitment of campers as well as volunteers has been a big challenge at The Painted Turtle. More kids have aged out of camps given the Covid-19 gap years, so getting the word out to the new families with kids aging in or becoming eligible for camp takes extra work. Also, The Painted Turtle’s contacts with hospitals and clinics are no longer in their same positions, so they are trying to reestablish new connections.

“There’s a lot of nurses are burnt out and overworked after they’re no longer working as nurses. Or the hospitals are so short staffed that a lot of the times the nurses that normally volunteer aren’t getting time off from work to be able to come to camp. It’s unfortunate.”

Terry Ackley, executive director of the Diabetes Education and Camping Association, described a disconnection post-Covid as well, specifically connection with the financial donors that make these camps possible.

“Because virtual camps didn’t cost as much, some of the donors that may have given at a higher level may not have given us much during Covid. But then they come along and they start supporting [a different organization], too,” he said.

And the fundraising required is no small feat. The diabetes camps Direct Relief supports all provide generous financial scholarships to all campers that are in need, enabling anyone eligible to come to camp no matter their ability to pay. And The Painted Turtle camp offerings are completely free of charge.

On top of all of the costs associated with a regular summer camp, these nonprofits provide most, if not all, of the supplies a child may need to manage their condition for the duration of the camp. The camps rely on charitable donation programs to ensure kids have access to the medications and supplies they need. Direct Relief works network of healthcare companies to donate products to camps to ensure kids have fun while staying healthy.

“We’d really be up a creek without the glucose strips [donated by Direct Relief],” said Dr. Hernandez. “Without those, that would be another $100,000 to $150,000 we would have to fundraise.”

Camps Continue Serving Throughout the Year

In spite of the present set of challenges, camp and camping association staff are continuing to push ahead, continuing summer camps and while also starting and growing various programs, such as webinars and weekend retreats, to help keep kids and their families connected to each other and to camp throughout the school year.

The mission to help children manage their health is a deep part of their lives. Cornwell manages type 1 diabetes himself, for instance, and Melendez first got involved with the Painted Turtle after her son, who was diagnosed with kidney disease as a baby, had a transformative time there.

“The thing that makes [campers] different out in the world, like at school and in their neighborhoods, in their community– their medical condition– is what makes them different from everybody else,” said Melendez. “But when they come to camp, it’s what connects them. It’s what makes them the same.

And so, by coming into camp, and being with kids like themselves, it really normalizes everything for them. The kids can walk away feeling a little bit like they’ve found their community and they’ve found their connection and they’ve found other people like them.

I think there’s so much power in that for everyone.”

Since 2013, Direct Relief has supported over 200 camps, located in 48 U.S. states, Washington, D.C., and Puerto Rico, focused on diabetes, hemophilia, asthma, and other chronic medical conditions requiring specialized care with donations of critically needed medical supplies and medications.

This camp season, Direct Relief is sending supplies, including glucose meters, test strips, lancets, and epi-pens to 90 camps that support over 16,250 campers with diabetes in 38 U.S. states, Washington, D.C., and Puerto Rico. Direct Relief is also sending medications, including factor VIII and IX, epi-pens and supplies to eight camps that support over 500 campers with bleeding disorders in eight states.