Camp Nejeda may look like any other woodsy summer camp where carefree kids swim, zipline and practice on the archery range. But for Emilio Colon and others like him who have type 1 diabetes, Nejeda is also a place where once a year they don’t have to worry about their health or explain their disease to others.
Colon was diagnosed at age eight. His mother knew something was wrong when Colon—an active kid who preferred water to soda—started taking naps during class. “The doctor explained to us that my body wasn’t producing insulin, but I didn’t know what insulin was,” says Colon, now 22. He did understand that it wasn’t good news when his mother began to cry in front of the doctor. The family had to start from scratch to figure out what this disease was and how to deal with it.
Colon started attending Camp Nejeda a year later. The sleepaway experience taught him how to manage his diabetes. He also learned the disease doesn’t have to control his life. After attending Nejeda for eight years, Colon is now a camp counselor and wants to impart that same attitude onto the kids.
Many of the campers have never had a play date or a sleepover out of parental fear something might go wrong, explains Jennifer Passerini, the camp’s development director. Common activities like playing soccer, eating birthday cake or taking a stressful exam can have an adverse effect on those with diabetes, and kids and their parents have to constantly monitor the disease. “The camp is not only an opportunity for the kids to be independent from their parents for the first time, but it is also a respite for their families who are also affected by the disease,” says Passerini. “Here the campers get to just be a kid. Everywhere else they are kids with diabetes.”
Located in Stillwater, Camp Nejeda is one of five independent non-profit diabetes camps in the United States operating exclusively to serve kids with type 1 diabetes; it is the only one in the tri-state area. The disease causes the body’s immune system to destroy insulin-producing cells, which are necessary to turn food into energy. The cause is unknown. Genetics may play a role. Exposure to environmental factors, such as viruses, is another possible trigger for the disease.
Without a supply of insulin, blood glucose levels (which tend to range from a healthy 70 mg/dL on an empty stomach to 140 mg/dL after meals) are often too high or too low and need to be monitored closely throughout the day. When blood sugar is low, those with the disease can experience dizziness, drowsiness, convulsions and unconsciousness. When it’s high, they can become dehydrated and confused, and can suffer stomach pains. “For parents with kids who have type 1 diabetes, they haven’t slept a full night since their children were diagnosed,” explains Passerini. Parents often check on their kids while they are asleep because their blood glucose levels can change during the night, with potentially life-threatening consequences. Insulin treatments are needed to balance the glucose levels throughout the day. However, there is no cure.
“Coming here, spending every night, and talking with other kids with diabetes who know what it feels like to be low and what it feels like to be high, makes it easy to form bonds,” Colon says. “You have so much fun here that you forget you have diabetes. The normal is to have diabetes.” Those who don’t are jokingly called “NDs”—short for non-diabetics.
This summer, more than 450 campers enrolled. There were two one-week sessions and three two-week sessions for campers ages 7 to 16. There were also three Family Camps accommodating 20 families each; these sessions allow families to meet others who share their unique challenges. Camp Nejeda also holds events throughout the school year.
Camp fees are $1,000 per week, but the actual cost to operate for one week is $1,800 per child. Charitable giving subsidizes the difference.
Campers get their blood glucose levels measured in the mornings and before and after each meal and snack, and as needed throughout the day, with a prick of the finger. They are also required to track their carb intake. In the dining area, a poster informs them of how many grams of carbs are in each food item: one cup of Rice Krispies equals 21 grams, while two tablespoons of honey mustard dressing is 5 grams. If the kids know they are going to be active that day, swimming or going on a hike, the medical staff adjusts their insulin needs. “Of course, it could rain, and now they’re inside watching a movie,” says Passerini. “Their blood glucose levels need to be readjusted again.”
Nurses and counselors walk the grounds equipped with emergency packs that include a glucose meter to measure blood sugar levels; sugar tabs, crackers, glucagon—which raises dangerously low blood sugar—and syringes to administer it.
Robin Greengrove, who has worked as a nurse at the camp for nine years, also carries a calculator in her toolbox of supplies to figure out and administer the insulin for each camper. “Every kid is a different mathematical equation,” she says.
Camp offers the kids a lot of teachable moments, she adds, such as how they react to adrenaline. “We’re teaching them how to manage their diabetes in all things that come up in life,” she says. “Diabetes shouldn’t restrict them.” The kids are also encouraged to try new things with their treatments, such as injecting insulin in new locations on the body.
Medical professionals at the camp follow a strict protocol. Each of the 10 cabins is assigned its own nurse. At its Helmsley Health Center, the medical team decides on each camper’s “correction,” which is how much insulin to give to correct low or high blood glucose levels. The center is open 24-hours during camp and has special procedures for emergencies.
Many of the campers are referred to Camp Nejeda by their pediatric endocrinologists; others by alumni or relatives. An 8-year-old camper named Star learned of Nejeda from her grandmother, an alumnus who believes the camp saved her life. The two share stories about their camp experiences.
Beyond the week or two of camp, most campers stay in touch using social media or texting. They have one another to communicate with if they have a bad day. Perhaps they were feeling high or low or were left out in school, Passerini explains. There are also opportunities for campers to talk to one another about personal issues they are not sure how to deal with, especially as they grow up. These include puberty, anxiety and stress, which can all affect diabetic individuals. “We need to bring up these more sensitive topics for the older kids,” says Greengrove. “Otherwise they will just be guessing on how to maintain their diabetes in these situations.”
Senior staff member and former camper Sabrina Rubinsky says being with people who understand such issues provides some relief. “There’s always a constant reminder of: When was the last time I ate? How active was I? How much insulin do I have in my body? And that’s on top of everything else the average person deals with.”
Rubinsky was diagnosed at age seven, a day before Halloween. Now that she is older, Rubinsky looks at the young kids and is amazed by how mature and responsible they are. “You see a 7-year-old testing blood sugar and counting carbs, planning ahead if they are going to be active, and determining how much insulin to take. That’s a lot for a kid to handle.”
Adam Sturts, a counselor who was diagnosed on this fifth birthday—also his “diaversary” as the campers call it—says the camp has provided him with social support. He now plans to pursue a career in medicine. “Because of my chronic disease, I have a better understanding of what others are going through,” he says. Rubinsky is a health and physical education teacher. Sturts is starting medical school in 2016. Both were inspired by their disease and the lessons learned at camp.
“These counselors are role models,” Passerini says, “They are showing the campers that they can grow up with diabetes and still pursue their dreams.”
Monica Rozenfeld is an editor and freelance writer based in New Brunswick.