Camp welcomes children with seizure disorders

Brianna Sosa was halfway up the rock wall when the feeling hit. She knew what was coming. The seizures she experiences daily are familiar enough that she stopped her climb and made it down to the ground on time.

Within minutes, though, the 17-year-old was planning her next trip up the wall.

Sosa has epilepsy, just like almost everybody else at Camp Wee Kan Tu, which celebrated its 10th year this week at the grounds of Camp Wing in Duxbury.

The camp is run by the Epilepsy Foundation of Massachusetts, and it is the only camp in New England for kids with seizure disorders.

“Everyone here has seizures,” said Sosa, a counselor-in-training this year after four summers as a camper. “Nobody thinks it’s weird, so we don’t have to worry.”

Of all the challenges of epilepsy – strict medication schedules, attendant developmental problems, and the seizures themselves – the social stigma can be the most painful, especially for teenagers.
“Other diseases you can hide; seizures are right there for everyone to see,” said Eileen Salmanson, the camp’s co-founder. “It can be a very isolating disease.”

Not at Camp Wee Kan Tu. Seizures are an hourly occurrence here, and nobody points and stares.
“It’s like, ‘oh, well’ and back to playing kickball,” said Deb Mayo, a counselor who has lived with epilepsy for 45 years.

On its face, Wee Kan Tu looks like any other summer camp. A soccer game was under way on the field. In the dining hall, a cabin of 11-year-old boys were in the arts and crafts corner making scrapbooks. A banner for the camp talent show hangs over the stage.

A few things set the camp apart, though. “Epilepsy 101” is a scheduled activity, just like pool time or kayaking. The camp infirmary, stocked with gauze and calamine lotion at most camps, is staffed around the clock by two neurologists and three nurses. And four times a day, the head nurse makes the rounds, handing out dozens of pill cups to campers.

But all that is “just background noise,” said Geoff Fudge, a nine-year veteran of the staff.

“These kids have epilepsy the rest of the year; this week, they just go to camp,” he said.

Steven Shorrock, 10, climbed the rock wall and he has the picture to prove it.

“I’m just here to show that it doesn’t matter if you have epilepsy,” he said as he glued the photo into his scrapbook. “I can do the same things as other kids.”

The campers are not the only ones for whom the week at Camp Wing is a breath of fresh air. At least half of the counselors have epilepsy, and for many of them, camp is a learning experience.
Lisa Volkening, 31, was diagnosed when she was in fourth grade. But it wasn’t until she joined the staff at Camp Wee Kan Tu six years ago that she really came face to face with other people like her.

“I wish they’d had something like this when I was younger,” she said. “I spent so much time feeling awkward and not being a kid.”

Parents also benefit from the week-long camp, taking a break from the constant supervision and anxiety that are part of raising a child with special needs.

“It’s a gift to my husband and me,” said Gail Biancucci, whose son Brendan, 11, was at camp for the first time.

Brendan’s epilepsy is controlled, but at the cost of brain surgery that left him developmentally delayed and needing constant supervision. This week, says Biancucci, that job belongs to someone else.

“We can go to a movie or have dinner or finish a sentence or any of the other things that take a backseat with Brendan,” she said. “It’s a vacation for us, too.”
Liz Hoffman may be reached at lhoffman@ledger.com.