Epilepsy News 6.26.08
Camp provides opportunity for kids with epilepsy
By Andria Farrell
Duxbury Reporter
Thu Jun 26, 2008, 01:02 PM EDT
A summer camp experience can be a life-changing event in a child's life, but for many years, children living with epilepsy did not have that experience.
On June 20, Camp Wee Kan Tu at Camp Wing in Duxbury celebrated its 10th anniversary with another summer season of approximately 50 campers, all living with epilepsy. For one week, these children have the opportunity to just be a child among children just like them.
"There are 3 million American's living with epilepsy," said Rebecca Oliver, communications coordinator for the Epilepsy Foundation of Massachusetts and Rhode Island. "A child could go his or her whole life without ever seeing a camp; this brings the kids together and sets the stage for a life that can be lived without the stigma they are different. Everyone knows how to take care of them and five minutes later they are back to arts and crafts."
Camp Wee Kan Tu is made possible through grants and donations, as well as volunteers, Oliver said. Through the Epilepsy Foundation of Massachusetts and Rhode Island, children with epilepsy from Massachusetts, Rhode Island, New Hampshire and Maine have the opportunity to spend a week of fun at camp with children just like them, she said.
Doctors and nurses like Sarajune Dagen and Barbara Dworetzky, doctor of neurology at Brigham and Women's Hospital, donate their time to provide a safe and healthy camp for the children. Dagen — or Nurse Sara, as she is known — has been a nurse at the camp for eight years. She said she came out one day and never left,
"It is a magical experience," she said.
With a 2-1 staff-to-child ratio and a fulltime nurse and doctor on staff at all times, children with epilepsy can have a normal camp experience without the fear of being looked at weird or made fun if they have a seizure, camp We Kan Tu co-founder Jeff Robins said. Robins said he and co founder Eileen Salmanson heard about an epilepsy camp in Virginia while attending a conference for the American Epilepsy Society in Washington, D.C. The two thought it was a great idea and wanted to begin a camp in New England.
"Here seizures are about as significant of an event as scraping a knee when they fall," he said. "After a child has a seizure, they get up and return to the activity they were involved in."
Epilepsy Foundation of Massachusetts and Rhode Island board member Janet Rich said the camp has given her daughter Amanda the opportunity to become a part of a community and see first-hand that there are other children and adults just like her.
"It gives the experience of camp where she would never be able to go to a normal camp because no camp takes on that liability," she said. "An epileptic in the water is very dangerous; they go on boats, and swimming. It is all supervised to make it a safe environment. They climb a big wall; she would never have that experience. It is a neat place to go and experience what these kids experience. They have top doctors, top nurses, all who volunteer their time. It is an absolutely incredible situation they have created."
Rich said not only does the camp give Amanda a chance to be kid, it also gives families a chance to relax without the constant worry that their child is in the other room having a seizure or is OK.
Amanda, who is now a counselor in training (CIT) at the camp, has been going to camp for nine years. She said she really enjoys all the people at the camp and doing all the activities. She enjoyed the fun of camp so much she wishes she wasn't a CIT, because she has more work to do and it is more exhausting.
Children can only attend camp until they are 18, after that some of the children have the opportunity to become a CIT or even a counselor.
"It has been very rewarding on all counts," Rich said. "She (Amanda) can have a normal camp experience where she can't anywhere else."
Another unique part of the camp is that several of the counselors have epilepsy, including Deb Mayo, who is also the administrative assistant at the Epilepsy Foundation of Massachusetts and Rhode Island. Mayo's condition cannot be controlled by medication, and has tonic-clonic or grand mal seizures approximately every three to four months. At 54, she said she wishes they had a camp like this when she was a child; she always wanted to go to camp but never was allowed.
"This place is so exciting, so unbelievable. It's my love, besides my grandson," she said.
Lisa Volkening, the woman's camp leader, had her first seizure when she in fourth grade. Today she is considered controlled because she takes medicine every day to prevent her from having a seizure. However, she said at camp it doesn't matter if you have a seizure. Some kids may have six, some may have one, but there are trained staff to care of them and get them back to their activity.
"It is great to see the kids do everything that other kids would do at camp," she said. "They have so much fun, and they have a seizure and keep going on. It is a part of camp life."
Ian Moorhouse, the director of Camp Wee Kan Tu, has been watching youths with epilepsy enjoy camp life and form friendships with other kids just like them since the beginning.
"They get a big boost and feel better see they are not just the only one," he said.
For information on the Epilepsy Foundation of Massachusetts and Rhode Island visit epilepsyfoundation.org/massri.
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