Andreea-Oxana Kilin is trying to establish a service in the Ottawa region that would see her and a group of volunteers engage children living with epilepsy through a variety of outings and activities specially suited to meet the needs of those affected by the neurological disorder.

Kilin, 29, has had epilepsy since she was 18. After her first seizure, she says she felt “self-conscious” about having epilepsy; self-conscious about how others viewed her and self-conscious about participating in activities, and it’s for these reasons she was inspired to stand up and do something so other young people don’t have the same experience.

“I would hate for the future kids to grow up (feeling self-conscious); I don’t want them to grow up always thinking that they’re the ones left out, the ones who ‘can’t’,” says Kilin, a professional chef by trade.

“I would like to have . . . friends and volunteers help me take kids out for activities that don’t involve anything that people with epilepsy can’t do. I want them to feel like they do have things that they can do.”

The idea behind this service is more than just providing meaningful activities for children, says Kilin; it would also be an opportunity to provide coaching to youngsters aged six to 14 so they have a better understanding of epilepsy.

“A lot of children with epilepsy I see . . . don’t know (about epilepsy), and don’t know why they can’t get a driver’s licence, or how come they can’t do (certain activities),” says Kilin.

While Kilin notes there are activities, such as summer camps, for children living with epilepsy in some areas of Ontario, there’s a lack of activities for children who have the neurological disorder living in the Ottawa region.

To date, Kilin has reached out to her local epilepsy support centre to share her ideas, and she’s currently in the process of trying to find others interested in helping her start the service via the Internet.

Ideally, Kilin says she would like to get this project off the ground by autumn.

In order to start the service, Kilin will need volunteers to help accompany her during activities and outings. Anyone wishing to help her with this project can contact her via e-mail at oxanakilin(at)gmail.com.

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Writer: Deron Hamel