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A Summer to Remember: Planning a Camp Experience for Kids With Epilepsy

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Sending your child with epilepsy off to a summer camp may raise all sorts of “what ifs” for parents. What if my child has a seizure out on his hike? Where’s the closest doctor? What if she forgets to take her medicine?

But the Epilepsy Foundation of Texas’ camping program has the “what ifs” covered. We recently spoke to Rebecca Moreau, program coordinator and camp coordinator for the foundation, and she told us that the program’s mission is to provide safe, structured fun. The counselor-to-camper ratio is 3 to 1 and counselors are trained in seizure emergencies. Medical teams, including pediatric neurologists, from the Texas Children’s Hospital are also on site for each of the three, weeklong camps.

“Our camps do a great service for our campers and our families,” said Moreau. “…It lets our kids know that they’re not alone. They come to camp, see all these other kids and teens with epilepsy, and they can say, ‘Hey, I’m not the only one going through this.’”

All across the country, children with epilepsy are getting that chance to experience summer camp—and see that they’re not alone.

These camps allow kids to let their guard down and have fun. They don’t have to worry about being sent home if they have a seizure. They don’t have to worry about what someone will think if they have a seizure. Everybody “gets” it.

And they get something else, as well—a chance to do what most summer campers do. They go on nature hikes, swim, fish, boat, have barbecues, and sing camp songs. It’s a typical summer camp, only with extra safety measures. For instance, when the kids are poolside at the Texas camps, lifeguards are joined by counselors who are either in the pool with them or standing around the pools to watch for seizures.

Camp Spike ‘n’ Wave® is the largest camp for children with epilepsy in the United States. Camp is held at Camp For All in Burton, TX, and has 185 campers, ages 8-14. Kids with all types of epilepsy are welcome. However, they have to be able to walk alone or with little assistance, get dressed and bathe themselves, as well as pass a physical by their doctor.

Ashley Byrnes, a former camper and counselor at Camp Spike ‘n’ Wave, talked to us about her experience. She was nine years old when she first became a camper in 1998. “I will never forget the first day. The counselors were super welcoming…and everybody knew my name,” she said. “I had never met any kids my age who had epilepsy.” Ashley went on to say how great it was to socialize with kids who did. “If someone had a seizure, it was like, ‘oh, you have seizures, too!’”

Although Ashley never had a seizure at camp, she knew girls who did. However, over the years, her grand mal seizures got worse. She had temporal lobe surgery in 2008 and has been seizure-free ever since. When she was a counselor, she said she would share her experience with campers. “It was very special to be able to relate to them that way.”

One camper told Ashley she was considering surgery and was very nervous about it. “I shared my story with her. I didn’t say, “‘this or that will happen to you’ because it may not.”

Ashley now volunteers as an assistant director at Camp Spike ‘n’ Wave while studying for her master’s degree in Family and Child Studies at Texas State. She said she credits camp for giving her the confidence to talk about her epilepsy. “I never wanted to tell my friends.”

While children with epilepsy gain confidence, make friends, and have a blast at camp, there are family members back home who also benefit from the experience. “It gives (families) some time to themselves—to have a respite knowing that their children are being taken care of,” said Moreau, the Texas camp coordinator.

Applications for campers and counselors at the Texas camps are now being accepted for this June and July. Camp is free, made possible through private donations from the Houston, Dallas-Fort Worth, and West Texas area—where most campers are from. Find out more about the camps here. Want to see if there’s a camp for children with epilepsy in your area? Check here to find a local Epilepsy Foundation chapter.

February 24, 2015 | Categories: General

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