Night Camp Offers Hope, Fun Without the Sun

Night falls and Sundown Camp comes alive.

Children splash in the pool, pet bleating goats and munch brownies. The young campers play at night, under the broad glare of floodlights, because sunlight can kill them.

Eleven children with a rare disorder called xeroderma pigmentosum gathered recently at a makeshift camp in a sprawling backyard in the Hudson River Valley 65 miles north of New York City. They came to do something they’d never done before--play with kids just like themselves.

Benjamin Terpstra, an 8-year-old from Dyer, Ind., romped around with a big smile, patted a llama and later curled up in his healthy sister’s arms beside a post-midnight campfire. The disease has made Benjamin’s walk wobbly and stunted his mental development, but his enjoyment was contagious.

“He doesn’t know exactly where he is, but he knows he’s somewhere special,” said his mother, Mary Terpstra.

Xeroderma pigmentosum is a rare degenerative condition that can attack the skin, nerve cells and muscles. Its telltale characteristic: Sufferers are unable to withstand ultraviolet radiation--just a few moments of sunlight can harm Benjamin and hasten his decline.

Children with XP, who rarely live beyond their teenage years, usually falling victim to skin cancer or various organ failures, must hide from the sun behind tinted windows, floppy hats, visors, No. 45 sun block or heavy clothes. Even sunshine seeping through a loosely woven garment can leave painful spots on the skin.

The condition affects different children in different ways. Sun exposure appears to scald and raise painful blisters on the skin of many children. Years later, some develop discolored cancerous patches. One camper, 8-year-old Alixe Johnson of Greensboro, N.C., has only freckle-like spots on her face. Others, like 6-year-old Amanda Clanton of Crosby, Texas, have difficulty learning and walking or moving.

“She’s like a 1-year-old in her head,” said Amanda’s mother, Angie Calloway. “She’s still in diapers; she’ll never be potty-trained.”

Although their symptoms are different, campers share an isolation born of their shaded existence.

“I want Alixe to meet a friend so she can write letters, exchange pictures,” Debbie Johnson said. “At home . . . she gets mad or she starts crying because she’s not like other children.”

Caren and Dan Mahar started the camp because of the lonely life facing their 4-year-old daughter Katie, who has XP. Dan, a mail carrier, carves out time at night for Katie, but he knows she’ll eventually need more than a father’s devotion.

“Many nights it’s just Katie and me, and we’re picking wildflowers or we’re sleigh-riding or we’re catching lightning bugs,” Dan Mahar said. “And although right now her mother and father, brothers and sister are her entire world and she’s not lonely, I feel that loneliness for her. I know as the years go on she’s going to start to wonder, ‘How come there isn’t anyone in the world just like me?’ ”

The disease is rare--chances of getting the genetically transmitted condition are literally a million to one. Both parents must carry the recessive gene that triggers it, and even then only one in four offspring will have XP.

That rareness has limited research into XP. In hopes of hastening a cure, the Mahars formed the Xeroderma Pigmentosum Society last year. Their goals are to raise research funds, increase public awareness and bring affected families together.

They see their camp as a way to do all three. The Mahars tracked down 57 families worldwide affected by XP. From that list, 11 children and teenagers accepted their invitation to summer camp.

The Mahars’ king-sized rural backyard became the camp, complete with a pool, big tent and 1,800 watts of illumination. A four-day itinerary was then cobbled together with the gifts of strangers.

Volunteer “camp counselors,” including a few postal patrons on Dan’s route, were easy to find. Extras came from big-hearted businesses: hotel rooms, animals for a petting zoo, a Hudson River cruise on a triple-deck paddle-wheeler, even psychologists.

Dan Mahar is especially happy about a nighttime tour arranged at President Franklin D. Roosevelt’s home in nearby Hyde Park.

Caren Mahar hopes the camp will be a steppingstone for a year-round “safe house” for kids with ultraviolet sensitivities, complete with tinted windows, outdoor lights and a dedicated research facility.

The camp proved as valuable for parents as it was for the children. And it offered a special opportunity for participant Rafael Figueroa, 19, of Lima, Peru. Figueroa, who has XP, said he hoped that his presence at the camp might help the younger children feel less dread about their own futures.