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- August 24, 1998
- Vol. 50
- No. 6
Into the Night
Their Lives Threatened by the Sun's Rays, Kids with a Rare Disorder Frolic After Dark at Camp Sundown
Isn't it a little past a 3-year-old's bedtime? Not at Camp Sundown. Like the other 10 children at the camp in Standfordville, N.Y., this week, Drew has xeroderma pigmentosum (XP), a rare genetic disorder that makes his skin hypersensitive to ultraviolet rays. Even short exposure to sunlight can cause severe burns, which almost inevitably lead to the skin or eye cancer that can kill many XP sufferers before their 30th birthdays.
The best defense is a painfully isolating one: to stay indoors, behind tightly drawn curtains. As a result most youngsters with XP have little opportunity for normal childhood activities, let alone summer-camp romps. That's where Camp Sundown—the creation of Dan and Caren Mahar, a LaGrange, N.Y., postal worker and homemaker whose 6-year-old daughter, Katie, has XP—comes in. In each of three weeklong sessions, about 10 children with XP, ages 2 to 17, arrive at the three-year-old camp from across the U.S. and as far away as Ukraine and Nepal with their parents and siblings. (This year the Mahars added a fourth week for young adults with XP.) Campers live with their families in cabins and arise around noon for breakfast and indoor activities such as arts and crafts. Then, after sunset, the real fun begins: hayrides, marsh-mallow roasts, sing-alongs, astronomy lessons and trips to nearby caves, a petting zoo, even a minor-league baseball game.
"Just having the kids be with other kids like them was important," says Yolanda Sandoval, 29, who brought her XP-stricken children Leanndra, 5, and Darnell, 4, to the camp. At their home on a Navajo reservation in Brimhall, N. Mex., she says, "we just basically stay inside all day long." Like one-fifth of XP patients, both children have neurological damage due to the disorder. Leanndra, who has already had a dozen skin cancers removed, cannot speak; Darnell, while tumor-free, cannot walk.
The families attend Camp Sundown at no cost, thanks largely to the Mahars, who fund it from Dan's $39,000 salary and abundant help they solicit from the community. The campgrounds are provided rent-free by their owner, and a local company chipped in the UV-protective film for the windows of its lodge and 10 cabins. College students and local residents volunteer as counselors.
When it comes to XP, this kind of grass-roots support is essential. "It's such a rare disease [affecting about four children in a million], it's almost like it's not big enough for large corporations to pay attention to," says Jeff Thomas, a Schenectady, N.Y., roofer and donor to the cause. Indeed, Yolanda Sandoval says that before attending the camp "I didn't even know that other kids had this illness."
At the center of it all are the Mahars, whose drive to help others stems from their own typically agonizing struggle with a child's XP. When Katie was born, Dan, now 39, and Caren, 37, had three healthy kids: Teresa, now 12, Danny, 11, and Brendan, 8. But minutes after Caren set 4-week-old Katie outside in her carrier while she helped Dan fix some shutters, they knew something was terribly wrong. The baby screamed "at the top of her lungs, like something out of a horror movie," recalls Caren. Katie's face swelled to twice its size. "It looked like a big red balloon," says Caren.
The Mahars soon learned that the slightest sunlight could harm Katie: she was even burned when Dan carried her, wrapped in a thin blanket, from the car to a Catholic church to be baptized. Though the couple had been carefully keeping her out of direct sunlight, Katie suffered eight severe sunburns before her second birthday. Afterward her scabbed face had "the texture of a leather football," says Dan. Her malady confounded doctors up and down the East Coast until 1994, when a specialist in Washington, D.C., diagnosed her correctly.
Caren threw herself into a strict regimen to keep Katie out of danger, but Dan plunged into deep denial. "Saying Katie couldn't be in the sun was like telling me she couldn't drink water," he says. One day he returned from work to find black garbage bags covering the windows and the house lit by candlelight. "I thought Caren had lost her mind," says Dan. She subsequently installed tinted windows, blinds and curtains and screwed low-wattage incandescent bulbs into the lamps. To this day she slathers Katie in sunscreen every two hours and wraps her in blankets for daytime trips to doctors or to school. (This fall, Katie will attend first grade twice a week and a tutor will come to her home the other days.)
The stress, however, was causing the Mahars' marriage to disintegrate. "We were like two strangers living in the same house," says Dan. Finally, in March of 1995, Katie's screams from a particularly bad sunburn caused an epiphany for Dan. "I finally accepted her illness," he says.
The revitalized couple's next step was to take out a second mortgage on their home to start the XP Society, the nation's first support group for families coping with the disease. "Instead of being wrapped up in our own problems, we had something in common to work on," explains Caren. Meanwhile, she was also trying to raise money for research into the disease, holding bake sales and soliciting donations outside her supermarket. But one scientist gently told her that the $10,000 she had scraped together would add little to their efforts. "Her spirits were crushed," says Dan.
Not for long. Deciding to refocus on XP's human face, the Mahars opened Camp Sundown later in 1995, holding the activities in their. five-acre backyard. For parents "the big thing was just to know that you're not in it alone," says Jewel Rockensock, 41, who came to the camp from Blackduck, Minn., with her son Brett, 17. For the children the thrill lies in the excitement of their after-dark romps (Caren told Katie that "Santa Claus and the Easter Bunny must have XP, because they only go out at night") and in the rare chance to do what most kids take for granted. Four-year-old Darnell Sandoval was delighted at fishing with his father, Dorey; Brett Rockensock, who can barely speak or walk, enjoyed playing the lodge's piano and exploring a visiting fire truck. "To watch them have a good time, maybe for the first time, that's very special," says three-year camper Rafael Figueroa, 21, who attended two sessions this summer.
And no one is likely to forget the night that Fred Stern, a visitor from New Mexico, came to camp. By manipulating spray from fire hoses to catch the moonlight, he created something most campers had never seen before: a rainbow, the symbol of hope, shining in the nighttime sky.
Joseph V. Tirella in LaGrange
- Joseph V. Tirella.
December 20, 2014
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