Super teens use knowledge as weapon against epilepsy ignorance

Teens Dan Nixon, Caitlin Shaw and Hayley Anderson of the Epilepsy Awareness Squad want to shatter the stigma of the disease through education.

SUMMERLAND - No car and no funding are no problems for a Summerland squad looking to shatter the stigma of epilepsy.

Teenagers Caitlin Shaw, Hayley Anderson and Dan Nixon started the Epilepsy Awareness Squad under no banner except their own. Typically, volunteers who wish to give of themselves join already established entities such as the Canadian Cancer Society or the Okanagan Similkameen Neurological Society. These groups can give advice, materials and funding in some cases.

The Squad believed they had what it took to do it on their own and began blazing their own path earlier this year. One of the challenges has been none of them can legally drive. They also have no real funding to speak of, have to find ways to raise money to give to the B.C. Epilepsy Society, get transportation to and from events, set up their own hand-made booths and speak to complete strangers.

Caitlyn's mother, Cathi Shaw, says it's been amazing how much the group has done.

"I'm surprised how committed they are," she says.

It's worth it for Caitlyn who has epilepsy herself. At a Summerland cafe she, Hayley and Dan, described her on and off again condition. She says she's gone without a seizure for a two-year period once but she did have an episode in school which really embarrassed her.

"No one has really been mean to me about it. They've just been nice," she says.

But she knows that's not true for many with the disease. Before the group got started, Caitlyn encountered a woman who she says lost her job when her employer found out she had the condition.

"She said it completely ruined her life," she says. "Every job she got she got fired because of it."

The teenager also met others with epilepsy while getting tested in Vancouver.

"You see kids in the hospital and they are having a million seizures a day. And they have it way worse than you so you kind of want to do something," she says.

That first something was a garage sale. Dan heard about it and ventured over to help out. He didn't know much about epilepsy but has learned a lot since then.

"Back in the old days people used to think you were possessed by the devil. Bodies start convulsing and some people foam at the mouth. And in the old, old days they used to burn them at the stake," he says.

As for the garage sale, it turned a $600 profit which surprised everyone. Dan thinks it's because Caitlyn had a lot of "nice junk" to sell.

"There were movies and books. And a canoe. I just brought myself and my good spirit," he says.

After the garage sale came information booths at Summerland and Penticton farmers' markets and fairs. The group would tell passersby not everyone with epilepsy has the same epilepsy and those with it can control it and/or live full and productive lives.

After the information booth came the hand-crafted T-shirts which the group decided should have a super-hero theme. Then wrist bands. Caitlyn and her (super) friends plan on having another garage sale this fall.

For more information about the group's activities check out their Facebook page or follow them on Twitter. Alternatively, for those wishing to learn more about epilepsy they can go to Caitlyn's website, Sandpaper Smiles.

To contact a reporter for this story, to send photos or videos, email Shannon Quesnel at, call 250-488-3065, tweet @shannonquesnel1 or @InfoNewsPentict

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