After a long day of work during Christmas holidays, Melike Ceylan-Leamen picks her son and daughter up from her parents’ house and goes to her Whitby home for the night. As her two-year-old son, Aydin, falls asleep he has a grand mal seizure. Ceylan-Leamen calls an ambulance and through an ice storm, rushes Aydin to emergency.
After hours of waiting while the doctors did an overnight EEG, Ceylan-Leamen and her family were sent home.
Three years later, in 2014, a sleep-deprived EEG disclosed that Aydin has epilepsy. That January, the family discovered Aydin was having one hundred seizures a day.
“It was traumatic,” she said. “I was still working and it was not easy to take time off and take him to hospitals and doctor appointments.”
Ceylan-Leamen and her husband James Leamen faced inexperienced neurologists, ineffective medication that only worsened the seizures and long nights of tests in the hospital.
As Aydin grew, his seizures continued, and as a young child living with epilepsy, one of his greatest struggles was school.
His teachers ignored his absent, or petit mal seizures, and denied him recess, or in grades two through six, sent him to the back of the classroom with a Chromebook and headphones.
Ceylan-Leamen noticed not only was her son not learning but his needs as a child living with epilepsy were not being met.
As a resident of Whitby for over twenty years, she decided to get involved and create change in the Durham District School Board (DDSB).
Melike Ceylan-Leamen now works in her community in Whitby and Durham Region to raise awareness for epilepsy and help children like Aydin get the supports they need.
“We went through hell to get him supports at school,” Ceylan-Leamen said. “I think I spent thousands and thousands of hours working with the schools.”
While Aydin had an Individual Education Plan (IEP), little to no effort was made to help reach his educational goals or curricular outcomes. Aydin had to switch schools to be put into a small placement classroom and receive the support he required.
Ceylan-Leamen met with teachers, superintendents the former DDSB Trustee and the principal to find a way to help Aydin, but it was all “falling on deaf ears.”
“It was me fighting the school board for years to try to get him EA support to avoid leaving him at the back,” she said.
Ceylan-Leamen ran for DDSB Trustee in the past municipal election because of watching her son face challenges in a school over the last dozen years.
For years she had insisted for change. Ceylan-Leamen spent a lot of time working and negotiating with former DDSB trustee Niki Lundquist, who told Ceylan-Leamen that she would be the perfect fit for trustee.
Ceylan-Leamen also serves as a secretary on the Board of Directors for Epilepsy Durham. She initially joined as a client for Aydin and quickly became an ambassador along with Aydin, who has been an Epilepsy Durham ambassador since he was four-years-old.
At Epilepsy Durham, Ceylan-Leamen worked as a leader on peer-to-peer connections, education programs and supported other parents of children living with complex epilepsies.
Chelsea Kerstens, the executive director of Epilepsy Durham said that Ceylan-Leamen’s positive impact is hard to measure because she “provides so many layers of support” to the families that reach out to Epilepsy Durham Region.
“When I meet new families that are looking for hope and support and a little bit of insight into what the future holds, Melike is one of my go-tos to connect those families with,” Kerstens said.
The years of effort Ceylan-Leamen has devoted to ensuring Aydin’s school environment is comfortable, is slowly coming to fruition.
“I got a call and I was ready to fight to make sure he got the supports. When they told me they got a small placement class and EA support, I started crying,” Ceylan-Leamen said. “And I don’t cry.”
Balancing her job in IT, her volunteer work and responsibilities as a mother can sometimes be mentally challenging. But her husband, James Leamen, sees the impact of Ceylan-Leamen’s hard work, on Aydin.
“Through Mel’s dedicated advocacy for Aydin at every step, he learned from a very young age that his condition is nothing to be ashamed of and rather an ongoing journey he needs to own and manage as best he can, one day at a time,” he said.
Ceylan-Leamen balances Aydin’s nightly seizures, her job at Microsoft and volunteering with Epilepsy Durham, all with strength.
“I just can’t get over the things that they [Ceylan-Leamen’s family] go through and her ability to do it seemingly unscathed,” Kerstens said.
Ceylan-Leamen advocates for Aydin and all neurodiverse children, as she believes that no one should feel alone in their journey.
“Superhero mom, superhero ambassador,” Kerstens said. “There’s just no other way to put it.”