ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Monday, July 15, 1996 TAG: 9607150116
SECTION: NATIONAL/INTERNATIONAL PAGE: A-1 EDITION: METRO
DATELINE: LAGRANGE, N.Y.
SOURCE: MICHAEL HILL ASSOCIATED PRESS
XP CHILDREN rarely live past their teens. While they're here, they yearn for the adventures other kids take for granted.
Night falls, and Sundown Camp comes alive.
Children splash in the pool, pet bleating goats and shovel brownies into their mouths. 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 last week at a makeshift camp in a sprawling back yard in the Hudson Valley 65 miles north of New York City. They came to do something they had 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 rarely live beyond their teen-age years, usually falling victim to skin cancer or various organ failures. They must hide from the sun behind tinted windows, floppy hats, visors, No. 45 sunblock or heavy clothes. Even sunshine seeping through a loosely woven garment can leave painful spots on the skin.
The condition affects children in various ways. Sun exposure appears to scald and raise painful blisters on the skin of many children. Years later, some develop discolored cancerous patches on their skin. One camper, 8-year-old Alixe Johnson of Greensboro, N.C., has frecklelike spots on her face. Others, like 6-year-old Amanda Clanton of Crosby, Texas, suffer slowed mental growth and move unsteadily.
``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.''
While the 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 a million to 1. 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 teen-agers accepted their invitation to summer camp.
Camp was set up in the Mahars' king-size rural back yard, complete with a pool, big tent and 1,800 watts of illumination. A four-day itinerary was 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-decker paddle-wheeler, even psychologists.
Dan Mahar is especially happy about a special 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.
Sundown Camp this year proved as valuable for parents as it was for the children. Throughout the week, parents swapped stories of hardship and hope. Mary Terpstra and Debbie Johnson were able to talk to an XP expert over the evening campfire.
And it offered a special opportunity for at least one participant. Rafael Figueroa, a 19-year-old with XP from Lima, Peru, said he hoped his presence at the camp might help the younger children feel less dread about their own uncertain futures.
Although his face is scarred from more than 100 surgeries to remove malignant or pre-malignant growths, Rafael remains sharp-minded and plans to study medicine.
``If I did think about it, I'd be depressed,'' he said of his illness. ``Yes, it's isolating. It can be torture sometimes.''
The Xeroderma Pigmentosum Society is at 57 Sleight-Plass Road, Poughkeepsie, N.Y., 12603. The phone number is (914)473-4735.
LENGTH: Long : 106 lines ILLUSTRATION: PHOTO: AP. 1. Dan Mahar shows Benjamin Terpstra the fish tankby CNBat the Mahar home. Mahar's daughter, Katie, has xeroderma
pigmentosum, as does Benjamin. 2. Kara Ziegler sits in front of
Katie Mahar, 4, and sings to her during the first session of the XP
Society's Sundown Camp.