CRARYVILLE–What would you do if your infant daughter turned out to be one of the one in a million Americans afflicted with xeroderma pigmentosum, a rare genetic disorder that makes the sun an enemy?
XP sufferers can’t go out in daylight without risking irreversible skin damage. The condition means that their highly photosensitive skin cell DNA can’t recover from routine changes we all experience caused by ultra violet light because it can’t synthesize a necessary protein molecule. These permanent changes or mutations open the door to skin cancer, melanoma and eye problems, and patients have a higher incidence of hearing loss and other problems and a lowered life expectancy. The condition affects around 3,000 individuals worldwide according to one estimate.
When their daughter Katie, now an animated 18-year-old, was 2, Dan and Caren Mahar started a foundation to study XP, share information and search for a cure. The foundation led to the growth of a community of XP sufferers, their families and friends, and the creation of Camp Sundown. The camp started in 1993 in Poughkeepsie and moved to Craryville in 2003.
“We can’t have her go through all this alone,” said Dan Mahar in a clip from “The Dark Side of the Sun,” the Italian documentary film in the works that will be released next February by Citrullo International.
Several visits to Camp Sundown in July during each of the three sessions that were held for children, adults and teens, offered the chance to see happiness in action: parents and kids finding a common bond and a sense of community and togetherness missing in their everyday lives; and friends from past summers enjoying a joyful reunion.
The camp’s facility and all its activities are tailored to the needs of its sun-shy inhabitants. The building, equipped with special UV screening glass in its windows and doors, is large enough to accommodate spaces for dining, gatherings and performances. It has a crafts room, a computer room, and a capacious swimming pool. Hallways lead to family size hotel rooms, with private bathrooms. Visitors pass through dark curtains before entering the safely lit but dim environment.
After dark, campers emerge to frolic under the moon and stars, play in a huge field, or sit around a blazing campfire in the woods to sing, tell stories, and roast marshmallows. Afternoons campers swim, get scuba instruction, and do crafts activities.An author ran a workshop for teens on writing crime novels. Groups went on nighttime field trips to a farm and an art gallery and upon their return sent fragile and ghostly giant Thai lanterns provided by the Italian film team up into the night sky. Midnight swimming is a time honored routine at the camp.
“It’s awesome to be able to come here and experience it with everyone. You won’t find very many camps like this. Wendy thought she was the only one,” said parent, Jackie Thomas from Athens, Tex., of her 2-year-old daughter, whose first trip to camp last year was sponsored by a local make-a-wish foundation. “You’re all joined into one great big family.”
“We are the Italian part of the family,” said film director Carlo Hintermann, who has traveled numerous times from Rome, Italy, with his crew to work on the film both at the camp and at campers’ homes in Texas and Alabama. Mr. Hintermann first read about Camp Sundown in The New York Times.
“It’s not just a job, said Daniele Villa, his producer. The filmmakers involve the campers in their production process, creating activities for campers that they film, and screening animated sections of the film for them. In an impromptu performance, they sang a high-spirited Italian song late one Saturday night to the delight of campers, many of whom would leave before daybreak to catch early morning planes.
Visitors, some who are housebound most days, come from Brazil, Nepal, Kansas, Texas, Pittsburgh, New York City and elsewhere. Parents say they are grateful to find a place where their children don’t have to feel different, a place where they find a sense of belonging. Volunteers come back every year to help cook meals, and act as counselors. Sponsors and donors help fund the operation.
A group of professional clowns, who have come to the camp to work with kids and adults since 2004, started their own fund raising effort to help the camp. Children selling lemonade on nearby Bells Pond Road this summer in Claverack told a reporter who stopped to purchase one that the proceeds would go to Camp Sundown.
“Kids Caring For Kids,” a Chatham group aligned with the Mac-Haydn Children’s Theater, visited Camp Sundown to play theater games with the kids. They plan to return next year for a more intensive program. The group sponsored a camper this year and hopes to sponsor two next year.
“We were fortunate to get to go there; it’s been a great opportunity for our kids,” said Therese Hoarty, director of community outreach for the group, who noted how affected her volunteers were by the experience.
But in the current economy, running an operation like this is not easy. “This was our most difficult year ever raising funds for Camp Sundown,” said Carin Mahar in a speech she gave thanking the clowns for their contributions. Ms. Mahar said that the economy influenced their decision to hold only three one-week sessions this year, down from six the previous year.
Tears were shed around the campfire in memory of 36-year-old counselor and XP sufferer Kevin Swinney from Alabama, and many campers wore purple memorial t-shirts celebrating the life of Linda “Peanut” Diehl, a long-time clown volunteer. Both had died since last summer.
“The way to preserve his memory is to keep this camp going,” said Brian Goldhammer, who recalled Kevin as always wearing a Cincinnati Reds shirt and cap with sunglasses completing his uniform. Mr. Goldhammer, a former neighbor of the Mahar’s from Poughkeepsie, spends his summer vacation volunteering at the camp.
Katie Mahar, an enthusiastic counselor at camp this summer, graduated from Hudson High School last spring, and is looking forward to attending Columbia Greene Community College in the fall, where she plans to major in criminal justice, along with studying dance and writing.