Everyone Is A Winner Here
Ann Farrell
At this camp, everyone's a winner - those who have epilepsy, their families, their friends, and even those who come in contact with them when they return home. Their experiences at the Spike & Wave Camp at Camp Couchiching have made this possible, and are the outcome of the efforts borne of the vision of five couples who got together ten years ago to form the Epilepsy Research Fund of Canada (ERFC).
Husbands in this group have their own special role to play. They may not be able to spend as much time on projects as their wives, but they make their own particular contribution in kind: photocopying, legal and accounting services, or products from their businesses.
Each couple has a child with epilepsy. As most people are aware, seizures - regardless of their frequency and severity - are a trial both for those who have them and for everyone they contact. Somehow, seizures have a ripple effect in the community, and finding a way to get the best out of this situation is a challenge.
Although they didn't know each other when they first met, the group was united through its children's seizures. Members believed there was a need to provide an environment that would be helpful both to the children and to their families, since the stress affects all concerned.
At the Spike & Wave Camp (S&WC), children share the program with others: some with epilepsy, others who with different challenges, and some so-called "normal" youngsters. There are several advantages to this type of integration. Through mixing with others, something these children may not regularly do, they have an experience that is both enjoyable and helpful in their social development. On the other hand, the children who do not have epilepsy gain an appreciation of the difficulties of those who do, and learn that, apart from seizures, these children are no different from themselves.
For parents, the camp is 'time out', a temporary relief from the stress of living with a child with seizures, especially for those whose epilepsy is poorly controlled.
As for the children themselves, every part of their camp experience is a bonus. It gives them a new-found confidence. For instance, they may never have learned to swim or take part in other sports. Here, they participate and find they are accepted, whatever their level of performance. Also, their parents know that every moment is carefully supervised and their youngsters will come to no harm.
New friendships are formed, often more easily because the camp experience lends these children confidence socially, as well as in other respects. It lessens their feelings of being 'different.' Another benefit for the other children is that they learn about epilepsy, what to do for someone having a seizure, and how they can help by accepting them.
These benefits aren't confined to the time the children are at camp, whether they have epilepsy or not. When they return to their home communities, they take their camp experience with them, and are likely more open to living together harmoniously than before. Their parents also gain because they have been made aware that their children can be accepted in their neighbourhoods.
One boy, Luke Perkins, shared a hut with three other youngsters with epilepsy. Even though he was used to his sister's seizures, he still felt he added more to his knowledge from his fellow campers.
His sister Becky went to S&WC for three years and according to her mother, Barbara, it was a wonderful experience, especially as Becky's seizures demand 24-hour supervision. Perkins said her daughter could never have managed without the medical, social and psychological support that is available.
ERFC was given its initial headstart when well-known artist, Trisha Romance, gave the fledgling organization 2 substantial donations. However, this group has no slouches when it comes to fund-raising. For example, they raised $80,000 and funded 2 Research Fellows at the Wellesley Hospital [a division of the Toronto Hospital] to research the medical and surgical management of patients with uncontrolled seizures. In 1992, they supported a $36,000 research project at Playfair Neuroscience Unit (Toronto Hospital, Western Division) to study the effects of benzodiazepines on neonatal brain neurons. They have also supported a research project on children with subclinical seizures at Chedoke McMaster Hospital in Hamilton.
Each fall, ERFC holds Artists for Epilepsy night at Harrop's Restaurant and Gallery in Milton. Through donations from artists, often signed, and gifts from businesses, an auction of valuable art and merchandise helps raise research dollars.
Not all fundraising efforts are on such a big scale. Car washes, for instance, involve both parents and their children who have epilepsy. When drivers see that children are working alongside other volunteers, they are impressed, and it's not unusual for a request for $3 to bring in $20 instead. This helps the children feel they are part of the solution, not just part of the problem, and it also serves as public education, showing that just because you have epilepsy it doesn't mean that you can't contribute.
Some fundraising has its humourous aspect. At one auction, a man took off his "Christmas" tie to be auctioned. It raised $200 and there is a sequel to this story. He wants his tie to come back this year to the auction where he intends to make a successful bid because he wants it back! As Sandra Belvedere (one of the original quintet of ERFC couples) says, "The best way to make your fundraiser a success is to make it a party."
The essence of the foundation, though, is the opportunity it provides in giving a boost to children's development, supporting parents in their ongoing commitment, and linking them with others in the community in order to foster a climate in which everyone can work together to improve the lifestyle of those with seizures.
ERFC, not content with its success at camp, recognized that their children ultimately need to achieve some degree of independence. As a result, Bridge Home recently opened in Erin, a cottage setting in south western Ontario, to bridge the gap between living at home and in an institutional setting.
There will be more on this project, thought up by Barb Perkins and her husband John, in a later issue of Sharing. But the last word goes to their daughter Becky, one of Bridge Home's two tenants. Asked what was the best part of her time at Lake Couchiching when she was younger, she answered: "Everything was!"
Editor's Notes: Founding members of the Epilepsy Research Fund of Canada included: Sandra & Don Belvedere, Sabina & Alan Erlich, Lydia & Robert Lundy, Barbara & John Perkins, and Alma & Harold Sidani.
Epilepsy Ontario wishes to thank the Epilepsy Research Fund of Canada for its ongoing support of the Spike & Wave Camp.
