Those who have spent their childhood summers away at camp often have nostalgic memories of hikes and camp-outs, arts and crafts, and lakeside fun. For children with special needs, however, these simple activities can seem entirely out of reach. But thanks to the efforts of two Valley organizations, summer fun is no longer limited for kids with two different disorders.
It’s hard to imagine summer camp without sunshine, but for children with xeroderma pigmentosum (XP) or porphyria — two genetic conditions that cause severe injuries from UV rays — even the smallest amount of sunlight can be dangerous. At Camp Sundown in Craryville, children with these diseases can enjoy a week of swimming, arts and crafts, fishing, field trips, and most importantly, friendships with people just like them.
“A disease like this is something that affects the whole family, so the whole family stays at this camp,” says Caren Mahar, cofounder of Camp Sundown with her husband Dan. “We have some campers that return year after year; it’s become very close-knit because of the common bond of not being able to go out in sunlight.”
Campers between ages three to 25 typically break themselves into groups depending on age and interest. Various activities — swimming, crafts, games, and workshops — are held indoors during the day. Outdoor fun — including field trips to farms, museums, and other facilities, which stay open late especially for the campers — takes place after the sun sets.
“These kids are so very grateful for the simplest of things because they’re inside all day,” Mahar says. “Just the idea of taking them fishing or having a softball game is such a huge deal to them.”
Camp Sundown has been operating for 19 years through the XP Society, which the Mahars founded after their daughter Katie was diagnosed with XP: Her skin lacks the ability to heal itself from UV rays, causing cells to become cancerous, and often results in burns, scars, and eye damage. “My daughter was born in 1992, and in ’94 we got the diagnosis that she had the disorder — she had eight third-degree burns and we couldn’t figure out why,” Mahar explains. “At the time there was no organization for people with XP so we started the first support group, gathering families to share how they were living and coping with their lives.”
Now 22, Katie still enjoys attending camp each summer, along with children who have conditions that require them to stay away from sunlight. Along with XP, these include albinism and a type of porphyria in which sunlight poisons the blood, leading to kidney and liver damage. “We have campers that come from all over the world and don’t always speak the same language — but kids seem to have a language all their own when having fun,” Mahar says. “They come with an incredible amount of enthusiasm and anticipation. It’s incredible to see all that fulfilled through the camaraderie that develops.”
Communal bonding is an important factor at many camps for special-needs children. Providing a safe place for kids to meet and play with others just like themselves is a large part of the mission of Camp Carton, a new camp for kids with Tourette’s syndrome. Like any other summer camp, kids enjoy seven days of hiking, swimming, arts and crafts by day, plus fireside s’mores at night. But Camp Carton counselors are trained to interact with and care for children who suffer from tics — involuntary verbal or physical reactions, such as shouting, shoulder jerks, sniffing, blinking, hitting, or twitching.
The camp was created by Craig Carton, host of the Boomer and Carton sports radio show on WFAN-AM and the founder of Tic Toc Stop, a nonprofit that raises money to find a cure for TS; Carton and two of his children suffer from this disorder. “There is no other place like this where kids can come together all because they have this same issue — everyone tics here,” says Aimee Skier, a board member of Tic Toc Stop. “We share with each other and embrace each other because we all understand.”
For its inaugural season, Camp Carton will welcome about 50 campers ages 10-13 from the tri-state area to the 250-acre campus of Ramapo for Children in Rhinebeck — with the nonprofit covering the cost for each camper. The main goal, says Skier, is to provide a “regular” camp experience. “Many children attending Camp Carton don’t know any other children with TS. This is a wonderful opportunity to connect these children and create positive memories and lasting friendships.”
Xeroderma Pigmentosum Society
437 Snydertown Rd., Craryville. 518-851-3466; www.xps.org/campsundown.htm
Ramapo for Children campgrounds
Rte. 52, Rhinebeck. www.campcarton.com