Dads of Epilepsy

Barry – Father of Kate

Kate with her father, Barry

Our daughter, Kate, was born perfectly healthy. As first time parents, we were delighted with our new family addition. For two and a half months we experienced what millions of young parents go through every day. Then, at the end of November 2012, we experienced Kate's first seizure.

It was my wife who knew what was happening first. Ever the optimist, and perhaps slightly ignorant as to what a seizure looked like, I refused to believe that was what was happening to Kate. Nevertheless, I couldn't deny that this was not normal and we called 911. This would be the first of a long string of seizures Kate would endure in her first year of life. Doctors at first thought perhaps it wasn't a seizure, then, maybe just a febrile seizure, a reaction to her recent vaccination. After nearly a month of living at Sick Kids and a considerable amount of stubbornness on our parts, Kate's blood was taken for genetic testing. We were eager to get the results but in hindsight I wish they had taken a bit longer. The diagnosis matched the worst-case scenario we had been researching online—Dravet Syndrome—a life-long genetic disorder, almost completely unresponsive to traditional anti-epileptic drugs. It wasn't going to go away and there was precious little we, or the doctors, could do to treat it. Kate's physical and mental prognosis are poor and we have a high risk of losing her before her 18^th birthday.

At almost five years old, Kate's seizures are much more controlled now. They are shorter and less frequent. When she has a seizure we no longer call 911 or rush to the hospital. We make sure Kate is comfortable, her meds are nearby if needed, and we keep her company. Kate is taking a type of non-psychoactive cannabis oil to treat her epilepsy. It's my incredible honour to be able to work for the company that makes this oil. I am incredibly fortunate as it allows me to work from home and spend more time with my daughter, while working towards helping others find the same relief. I am also part of the Canadian Dravet Foundation, taking part in funding important research to hopefully one day find a cure for this horrible disease. As a father, it's still incredibly painful watching my young daughter suffer, but I find some relief making the most of all the good days and working on a brighter future.

Barry Pogson
Toronto, Ontario

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dravetCanada - the Canadian network for families, friends and caregivers of people with Dravet spectrum disorders. Provides education and distribution of funds for research.

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