Camp Means the World to Kids with Epilepsy
More than 50 children with epilepsy have the time of their lives each summer at Camp Wee Kan Tu — aptly named by a young camper in bold recognition that these kids also crave outdoor fun. Attended by campers with epilepsy spanning ages 8 to 17, there are also counselors with epilepsy who gain a great experience and serve as role models for the campers. It is the only such camp in the nation.
This year, it was held August 23-28 at the Crossroads for Kids campgrounds in Duxbury. Funding for the camp is derived largely from donations and fundraising campaigns throughout the year. Some parents are able to assume all or part of the camp fee; no one is turned away due to lack of funds.
“Some of the children have never seen anyone else have a seizure,” said Mary Pennington, BSN, CCRN, clinical educator for BWH’s neurology inpatient units and camp volunteer. “It decreases their feelings of isolation and being different. But most of all, the kids just have a great time — wall climbing, swimming, playing miniature golf, going to a PawSox baseball game, singing around a campfire. It was a huge amount of work, but worth every minute.”
The camp idea was a goal of Eileen Salmanson, MSW, senior clinical social worker in BWH’s Outpatient Neurology Department, and came to fruition four years ago, initially under the guidance of BWH and Children’s Hospital. Edward Bromfield MD, director of the epilepsy program at BWH, assumed the medical directorship for the camp. As it evolved and grew during the first three summers, the Epilepsy Foundation of Massachusetts and Rhode Island took over responsibility for running the camp, with many of the same volunteers returning each summer.
Of the six neurology nurses who gave of their time this year, four were from BWH including the camp’s nursing leader Sarajune Dagen, RN, Pennington, Monica Aurilio, RN, and Kate Cannell, RN. There also were eight rotating neurologists from BWH, Children’s Hospital and surrounding hospitals, many of whom had recommended their patients as campers or counselors.
With the nurses’ experience and dedication to maintaining safety, a brisk medication schedule and the readiness to respond emergently at any time, the goal was to strive for a fun camp environment. Donated golf carts afforded a way to triage campers and counselors to the infirmary for medical problems.
Aside from the variety of engaging activities offered for campers, there was also a natural emphasis on developing new friendships and self-esteem.
For many, this was the first time away from home. The camp also provided a much-needed break for parents, who are constant caregivers to children with epilepsy. Some campers require partial or complete personal assistance, and some have cognitive impairments associated with the illness or treatment. All require increased time and attention.
Some children had never seen a seizure until camp. Through the support of the medical team, social work staff, counselors and other campers, they gained a greater understanding about their own epilepsy.
Special events included camp fires, a bus trip to a Paw Sox baseball game and a much anticipated dance. “Getting ready” — complete with curlers, cologne and the right outfit — has become a hallmark of the evening, and the staff ensure that everyone is asked to dance.
Rounding out the five days were a carnival, creative creature show and barbecue, all seemingly normal activities that often are not afforded to children and adults with epilepsy. But in an environment where seizures can be monitored by physicians and nurses, and a counselor-to-camper ratio at a minimum of 1-to-2, kids can just be kids!