Inside the Camp for Kids Who Play at Night — Because the Sun Can Be Deadly

All photos by Priscilla DeCastro for Yahoo Parenting

The evening sun is finally setting over the camp’s long, low building, and a dozen or so kids wait inside by the back door, restless and excited. It’s been a typical afternoon for these summer campers, who spent the last several hours horsing around in the indoor pool, playing video games in the game room, or sitting cross-legged on the dining room floor painting crescent moon henna tattoos on each other’s hands.

Now, with dinner over, the kids are aching to run around the camp’s meadowlike backyard. Camp volunteers have set up a minicarnival in the yard, so in addition to games like soccer and tag, the campers can indulge in powdery funnel cakes and take turns on the dunking machine. In a few hours, at 10:30 p.m., the plan is to light a bonfire and roast marshmallows.

But right now it’s still twilight, and a few parents remind the kids to wait. Sou Chelihi, a mom from Montreal whose son Rayan, 10, and daughter Daryne, 7, are racing up and down a hallway in joyful anticipation, carefully opens and closes the back door so she can stand outside and hold a UV meter in the air. “The number has to read zero before the kids can go out,” Chelihi tells Yahoo Parenting. “Otherwise, it’s not safe.”

Minutes go by. The kids slip off their indoor flip-flops and put on outdoor sneakers. The moms watch their meters go down to zero. Under a dark sky illuminated by portable LED lights, the kids scramble out the door and across soft grass. While the rest of the residents in the small country town of Craryville, N.Y., are winding down for the night, the kids at Camp Sundown have come alive under the stars.

At most sleep-away camps, kids start the day bright and early and return to their bunks before midnight. But this is Camp Sundown, an “upside-down” camp, as founder Caren Mahar has called it, thanks to the reverse schedule the camp adheres to. Launched in 1996 about two hours north of New York City, Camp Sundown hosts children with rare conditions that make any exposure to the sun dangerous, if not deadly.

Since the sun is their enemy, nighttime means freedom for the campers, who range in age from 5 through their teens and arrived here from as far away as California for the camp’s first weeklong session. Kids are on a different time clock here, sleeping until early afternoon and staying up till dawn. During the day, while most parents can rely on sunscreen to keep their kids safe in the sun, Camp Sundown families must take extreme precautions to prevent burns, blistering, pain, and other severe side effects of photosensitivity conditions.

Staying indoors is the first of many safeguards. All of the windows in the camp building are tinted and blocked off by curtains and blinds. Indoor lights are dimmed, and the bulbs are LED, because fluorescent and halogen lights emit a small amount of UV light, which can be harmful. (“We like Christmas lights,” Mahar tells Yahoo Parenting, pointing to a ribbon of soft white lights strung in the dining area.) Doors to the outside are opened slowly, to make sure the kids aren’t exposed to even a flash of sun.

These precautions might seem excessive, but the 30 or so kids and their families at Camp Sundown this week are used to it. In fact, the camp affords parents a different kind of freedom; it’s the one place where they can relax, knowing that everyone is following these house rules.

“Here, we’re not so on guard, checking windows and doorways,” Shelly Darts, a mom from Warren, Pa., tells Yahoo Parenting. Darts’s 10-year-old son, J.J., has solar urticaria, which means he’s allergic to UV light and any exposure can make him break out in blisters, burns, and hives. At Camp Sundown, parents like Darts don’t have to say no to birthday parties held outside, or attach a visor to a batting helmet so a child can play Little League, two things she has had to do back home. “Here, we know we’re safe.”

Camp Sundown was started by Caren Mahar and her husband, Dan, three years after they learned that their daughter, Katie, now 23, had xeroderma pigmentosum. XP, as it’s known, is a genetic condition that causes severe skin blistering and burning when skin is exposed to sunlight.

“The camp was nomadic for the first few years; we held it in our own house or rented motel rooms,” says Mahar, an energetic mom of five. When several acres of land across the street from the Mahars’ family home went up for sale, they bought it and gave the camp a permanent home.

Camp Sundown is a charitable organization with no paid staff. The camp functions thanks to a network of volunteer parents and local residents. They prepare meals in the camp kitchen, take care of the grounds, and put on clown costumes and make balloon animals for the kids. Many of the volunteers have been with the camp for two decades. Everyone seems to know one another, and that gives the camp the feeling of an extended and relaxed family reunion.

Because the camp doesn’t have facilities like ball fields or a lake, the kids and their parents often take field trips in the evening. One night, community members held a carnival in a local firehouse and organized a 1 a.m. baseball game. The kids also go on swimming excursions to a local pond and nighttime miniature golf outings. But much of their time is unstructured, and the children seem to love it.

Incredibly, Camp Sundown charges no fee to attend. “People come from all across the country to be here, so we feel that if they’re paying for their transportation, they shouldn’t have to then pay for camp,” says Mahar, who with her husband also runs the XP Society, an online clearinghouse of news and information on the condition that afflicts their daughter. The money needed to run the camp comes from community fundraisers and a decreasing number of corporate donations, which dropped off during the 2008 recession and have yet to really rebound, says Mahar.

The camp was born out of a failed effort by the Mahars to raise research money so scientists could come up with a cure for XP. “We were so naive,” recalls Mahar. “We raised $10,000 and called the National Institutes of Health to offer them the money.” But $10,000 is just a drop in the bucket when it comes to medical research. They were turned down. “Now we focus on improving the quality of life for these kids,” she says.

The first thing she and Dan built after buying the camp property was the indoor main pool and kiddie pool, which is almost always open to the kids. The Mahars’ 28-year-old son, Danny, serves as a volunteer lifeguard. The pool has deep significance for the family.

“One year before the camp had a permanent home, we brought about 15 kids to a local pool one night,” recalls Mahar. “Some of the townspeople actually showed up and blocked the kids from using the pool, standing arm and arm while saying, ‘We don’t want what these kids have.’ It was just ignorance on their part. But after that, my husband said that the first thing we’ll do when we get a camp building is build our own pool.”

Though the community overwhelmingly supports the camp and the kids who attend, Mahar says, ignorance occasionally rears its head. But she point out that none of the conditions the kids have can be transmitted through public pools or any other type of contact.

XP is genetic disease passed on when both parents carry a recessive gene. It’s so rare that only one child in one million develops it, Tor Shwayder, M.D., director of pediatric dermatology at Henry Ford Hospital in Detroit, tells Yahoo Parenting.

“Kids with XP are missing the gene coding that corrects damage done to DNA from the exposure to sunlight,” says Shwayder, who has researched photosensitive diseases like XP and treats children afflicted with them. (Shwayder is not affiliated with Camp Sundown.) When most people go in the sun, the DNA damage to skin from UV light is soon repaired. People with XP, however, can’t fix the DNA damage.

“The cumulative damage makes kids with XP thousands of times more vulnerable to skin cancer,” says Shwayder. This skin cancer, he says, is what ultimately makes XP a fatal disease, with most succumbing in their teens or 20s. Another consequence of XP is neurological damage, such as hearing loss and seizures, he adds.

There is no cure for XP, and the only treatment is to prevent the damage by shunning sunlight. “These are kids who have to stay inside all day, then go out at night,” says Shwayder. “When they do have to go out, they typically have to wear protective gear, including helmets and visors, and long-sleeved shirts and pants that cover every inch of skin.”

Sou Chelihi’s son, Rayan, has XP, and he must be covered from head to toe if he has to be in daylight. “During the dash from the car to his school, he wears a visor, gloves, long pants, and a long shirt,” says Chelihi. Rayan is used to it, she says, and he’s a regular kid in every other respect. (Her daughter Daryne does not have XP, she says.)

Porphyria, another condition many of the campers have, is also extremely rare and genetic. It’s a group of disorders that cause disruptions in the manufacturing of hemoglobin in red blood cells. “When this pathway has blockages, the molecules that build up are all very sensitive to light,” says Shwayder. “When light hits the skin, intense reactions occur, from burning to blistering.”

Kids with porphyria must be just as vigilant about staying out of the sun. The condition won’t lead to skin cancer, but there is a small risk of liver damage, which their doctors monitor.

Unlike most summer camps, Camp Sundown is a family camp. Parents volunteer, siblings serve as counselors, and kids who attended as campers hit their teen years and graduate to becoming counselors, too. There’s a great sense of unity here, since the camp brings together families who deal with conditions that are so rare that they’re unlikely to ever know another person who has them. “There’s a peace to that,” says Mahar.

Chris Soto, 22, is a counselor who began attending Camp Sundown when he was 12. Growing up in Queens, N.Y. with XP was isolating. “I wasn’t allowed to go outside during recess, and I couldn’t play after school with other kids,” Soto tells Yahoo Parenting.

“Anytime I had to be outside, I had to wear long-sleeved shirts and long pants and sunglasses,” he recalls. “It was hard growing up like that, and it affected my life a lot. I played football in high school, only at night of course, and got a few scholarship offers. But since I wouldn’t be able to play or practice during the day, I had to give them up.” Camp Sundown, he says, helped end that sense of isolation.

Like most adults with XP, Soto has already had a number of skin cancers removed, a consequence of the DNA damage caused by sunlight. His skin also bears the multitude of freckles characteristic of XP kids. Excessive freckling is one of the early symptoms of XP, says Shwayder.

Because he has had the condition for so long, Soto feels he has a lot to offer the younger boys at camp. There’s a group of four or five of them, all in their tween or early teen years, who take to Soto like a big brother. They have a blast in the indoor pool with him, throwing a ball around and trying to bombard each other with water. They challenge him to video games in the game room. Soto says he knows what they are going through.

“I talk to them; they tell me they’ve been bullied, and I say I know, I’ve been there,” he says. “I try to guide them. So few people have XP, it’s hard to understand it if you don’t. And I get the sense of relief they all feel here at camp. You feel free.”

Like Soto, Katie Mahar is also counselor at the camp. Diagnosed with XP at age 2, she can relate to that sense of isolation growing up. “It was hard seeing my brothers and sisters go outside to play when I wasn’t allowed to,” she tells Yahoo Parenting. A big basketball fan, she could only shoot hoops outside when it was dark and other kids had gone indoors.

Name-calling by other kids wasn’t uncommon. “I’d get called vampire,” she recalls.

Because she can develop a third-degree burn within 30 seconds of sun exposure, she has always worn long sleeves, long pants, and a helmetlike visor whenever she has to be outdoors. Windows in her home and the public school she attended had to be tinted to keep sunlight out.

“I’ve not actually seen sunlight since I was 2 years old,” she says. That may be why she’s likely the oldest person with XP to not yet develop skin cancer, the Mahars believe.

The limitations forced on her by XP, however, have not compromised her life. Katie recently graduated from community college and is now taking college classes in criminal justice; she’s aiming for a career in animal welfare. She has lots of friends, she says, and though strangers often look at her with curiosity when she’s wearing her protective visor, she says she prefers that they ask questions rather than stare.

Camp, she says, feels like home, and she’s especially proud of her parents for starting it and keeping it going. “I know everybody here, and I love seeing them every year,” she says, adding that she doesn’t feel like she’s missing much by spending her days indoors. “The way I see it, who wants to go outside anyway when it’s all sticky out there?”

Camp Sundown attracts many of the same families every year. This is Kristen Wheeden’s sixth summer coming to Camp Sundown with her husband and three sons. Her youngest, 10-year-old Brady, has porphyria. Brady’s symptoms appeared when he was a toddler, but it took years of doctor visits to find out what was making him scream in agony whenever he was in sunlight.

“Kids who have porphyria say it feels like hot lava flowing through their body, or a thousand needles pricking them all at once,” Wheeden, who lives in Bethesda, Md., tells Yahoo Parenting.

Though her community and friends have been supportive of the challenges the family faces, Wheeden is relieved to be among other parents whose kids are in the same situation. “It’s liberating here; there’s a solidarity we have,” she says. “No one asks dumb questions or makes mean comments, like you’re a vampire, you’re Darth Vader.”

Yet sometimes Wheeden has to go “Mama Bear,” as she puts it, indicating that Brady’s condition sometimes involves a battle. During lunchtime at school, while other kids played outside, Brady was made to sit indoors alone. But after Wheeden objected, school administrators changed the rules and allowed Brady and a friend or two to play in the school gym during lunch instead.

“Brady is otherwise a totally normal kid, and we tell him he can do anything he wants; we just have to figure out a way,” she says. That means going to the beach as a family after the sun has gone down or letting him ride his bike outside after dusk.

At Camp Sundown, Wheeden and other parents can breathe easier knowing precautions are in place to make sure the kids are safe. Brady does, too. “I can stay up all night, and I don’t have to think as much about what might happen if I go outside,” Brady tells Yahoo Parenting, while itching to get back into the computer room and finish playing a Batman video game with his friends. “Here, I feel relaxed.”

As a warm summer evening turns into a cool night, the kids of Camp Sundown continue to have a blast. As part of the minicarnival, a volunteer artist is drawing caricatures of kids and parents. A slip-and-slide has been set up near the dunking machine. A cotton candy machine is whipping up sticky pink sweetness.

The only snags have been the mosquitoes; keeping them at bay requires constant respraying of insect repellent. And the bonfire had to be canceled because of a bear sighting near the fire pit at the edge of the woods. But the night air continues to crackle with energy. Kids are running around, laughing and playing, occasionally checking in with parents who are standing around and chatting among themselves.

In two days, camp will be over, something no one is looking forward to. “The most poignant time is when everyone gets up Sunday morning, the last day, and has to gear up again and put on their masks, helmet, and hoodies,” says Wheeden. “The kids have to go back out in the world. I say to Brady that he has his outside armor, but he has to put on his inside armor, too — and take a deep breath and go outside.” Until camp meets next year … and Brady and the rest of the kids can enjoy the freedom of summer nights once again.

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