Summer is supposed to be a time of nonstop fun and excitement for children. But for kids suffering from xeroderma pigmentosum (XP)—a genetic disorder that affects one out of every 1 million Americans and can cause severe burns and skin cancer within just a few minutes of exposure to sunlight—summer can be an absolute nightmare.
Enter Camp Sundown, a summer program for children in Craryville, New York, that’s just like other camps except for one thing: The activities all take place at night. The children sleep late and play games indoors until sunset. At dusk they are free to venture outdoors and explore.
Dan and Caren Mahar, who have a child with XP, started Camp Sundown in 1996. The camp is free to the participants, thanks to financial donations through the nonprofit XP Society. Volunteers also give their time, talents and food.
Photographer Adi Lavy captures the experience the camp provides for children with XP in the images below.
Although XP patients wear long-sleeve clothes and a mask outdoors, they also use sunscreen. Gavin, 11, is from Kansas. His mask shields him from 99.9 percent of UV rays.
Chris, 17, looks out his window, which is tinted with protective layers and covered with a large curtain to shield him from the slightest exposure to UV rays.
Camp organizers put an emphasis on group activities to enhance the kids’ sense of community and friendship as well as improve their motor skills. Many XP sufferers are homeschooled, spending long days indoors with little physical activity or opportunities to socialize with other children.
Megan, a 22-year-old recent college graduate from Long Island, goes late-night fishing at Fox Hill Lake.
Campers experience the thrill of wall climbing as the rest of the group cheers them on.
Raphael, 10, joined Camp Sundown from Cuba and was accompanied by his parents. He is swimming in the indoor pool of the camp. The pool is located in a special building that blocks all harmful UV rays.
Darius, 15, watches TV during the day while he waits for the sun to set.
Juni, 17, Chris, 17, Emily, 15, and Katie, 16, spend a day at the movies.
Patrick, 5, buries himself in the sand just like he would if he could enjoy a sunny afternoon at the beach.
The lake at Camp Sundown is a hive of activity after sunset.
Each year there’s a carnival for the children. Clowns, artists, music and a baseball tournament are all part of the nighttime festival.
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