When you are a child with celiac disease, simple celebrations like birthday parties or sleepovers come with their own set of challenges.
Sabrina DeVos of Marion has been dealing with those challenges for 11 of her 16 years; the high school junior was diagnosed at age 5 with celiac disease, which occurs when gluten triggers an inflammation in the small intestine.
For nine years, DeVos has been attending a gluten-free summer camp in Rhode Island to enjoy a camp experience without the worries of what food is being served and if it will make her sick.
The longtime Girl Scout is now working hard to bring such a camp to the Finger Lakes as part of her Gold Award service project. She’s planning it for Aug. 1 to 3 at Camp Comstock in Ithaca and can accept up to 60 campers.
So far, about 15 have registered — including one youngster from Chicago. The camp is targeted for youth ages 8 to 15 with celiac disease and only costs $75 for the entire weekend. The high school junior said campers will stay in cabins and she is planning such activities as fishing, crafts, cooking demonstrations, swimming and campfires.
“I have always wanted to make a gluten-free camp,” said DeVos, noting the Girl Scouts have given her much help in making this dream become a reality, including a discount on Camp Comstock. Even though DeVos is organizing the camp with Girl Scout support, the camp is open to both girls and boys.
But it’s DeVos who has been doing much of the heavy lifting, her mother Christina McGlynn said.
“If I were to get hit by a bus, she’s got this,” McGlynn said.
Recently, DeVos has been busy writing letters to vendors for food donations, handling publicity and taking care of registrations. She also had to create the camp’s medical and photo release forms, as well as the website (www.celiacstrong. weebly.com).
“Getting the word out has been the hardest part,” said DeVos.
The camp will be staffed by her mother, stepfather, a camp nurse and volunteer parents, all of whom will undergo a background check. Caitlin Sexton, a dietitian and president of the Greater Rochester Celiac Support Group — of which DeVos is a member — is donating her time to review the camp’s menu to ensure it meets nutritional requirements for children.
DeVos said her goal is to make the camp an annual one and to provide young campers a good time without the anxiety of wondering if camp food will make them ill.
“I want them all just to come and not feel different or have to worry about what they’re eating for a weekend,” she said.
McGlynn remembers when she first started volunteering at the Rhode Island camp and saw Sabrina get in line at mealtime. Her first inclination was to go to the buffet to see what her daughter could eat. Then she realized it wasn’t necessary.
“It’s like [the kids] don’t have celiac for a week,” she said.
Sexton, who also has celiac disease, said it’s not “torture” living with a gluten-free diet “... but you definitely think about it every minute of every day. ... If I had an adult camp to go to I would.”
Sexton has been watching DeVos conceive of and work on this camp and described her as very organized and driven — much more so than a typical 16-year-old.
“She has really covered all aspects to meet this goal,” Sexton said. “It kind of blows my mind when I think about it.”