By Dave Flaherty/The Oshawa Express
When Aydin Leamen was diagnosed with epilepsy at the age of four, it brought about changes to his life and that of his family more than most people can comprehend.
Aydin’s mother Melike Ceylan-Leamen says her son, now nine, still hasn’t obtained a full diagnosis on what type of epilepsy he suffers from.
His condition has caused trips to several medical professionals and prescriptions of a number of medications, some that have caused adverse, and at times, alarming side effects.
“It’s been a long five years for Aydin,” she says.
And while the family still faces challenges, they receive a significant amount of support through Epilepsy Durham, a local non-profit advocacy organization.
“It has been a big, big support for us. We would have been lost [without them] like I said it’s a daily struggle when you have a child with epilepsy.”
The relationship between the Leamen family and Epilepsy Durham has become even closer after Aydin was chosen to serve as the organization’s ambassador.
In this role, he has somewhat become the face of epilepsy in Durham Region.
“He loves it. He loves going out and talking about (it),” Ceylan-Leamen explains.
The experience has boosted his confidence and allowed him to meet others who face the same challenges he does because of their condition.
Ceylan-Leamen praised Epilepsy Durham for connecting her with resources she may not have discovered otherwise.
She explains she is ‘very vocal’ on behalf of Aydin, but that is not something every parent may be comfortable with.
“I’m a very vocal person, so I’ll go fight Queen’s Park, I’ll fight the school board, I’ll take it all the way up if I have to. But there are quite a few parents who will bite their tongue, and there are kids diagnosed with epilepsy who don’t get the support,” she says.
For those who may feel isolated or alone, an organization like Epilepsy Durham can be their voice.
Unfortunately, the non-profit doesn’t receive outside funding from either the provincial government or United Way.
Because of this, Epilepsy Durham faces limited resources, a trend that Ceylan-Leamen believes is a broad standard.
“The government doesn’t have programs like they do for kids with autism. They leave parents to deal with all the side effects,” she notes. “There’s no mental health support when [a child] has anxiety or anything like that. We’re lucky we have medical coverage for that.”
Ceylan-Leamen says it has taken a ‘long time’ to get proper support for her son, and she imagines it is even more of a struggle for those facing greater financial limitations.
“Epilepsy Durham does a lot of work on behalf of those folks, but Durham Region is a very large area.”
This Monday (March 26) is Purple Day, an internationally recognized occasion to spread awareness and education in regards to epilepsy.
Started in 2008 by a nine-year-old student from Nova Scotia, Purple Day has since become a worldwide event.
The connection to the colour purple comes from lavender being the international flower of epilepsy.
Chelsea Kerstens, community outreach associate with Epilepsy Durham says there are many fundraisers held throughout the region but the primary focus in on raising awareness.
“A big part of Purple Day is really just trying to take epilepsy out of the shadows and let people know we are at the forefront…[and] showing people with epilepsy that there is supports out there,” Kerstens says. “I think a lot of people living with epilepsy feel like they are isolated or alone in their journey, and when they see the support across the community, they know that we exist and they can reach out to us for programs and systems to make sure they are living well.”
Epilepsy Durham Region offers a wide range of programs free of cost, including support for residents in accessing services, counselling and employment support.
Kerstens estimates there are about 6,500 people in Durham who live with epilepsy.
There are currently no epilepsy specialists located in the region, a situation Kerstens says they are working diligently to change.
“Right now, they may have to drive to Toronto, London or even Kingston to see an epilepsy specialist.”
For more information, visit epilepsydurham.com