Andy & Stephanie
From the father of a child with epilepsy:
I’ve been raising money for Epilepsy Toronto by running at the Scotiabank Waterfront Marathon since 2003 and been an active member of Epilepsy Toronto since 1992. Our daughter Stephanie was diagnosed with epilepsy (Lennox-Gastaut syndrome) at only 4 months old. To this day, she has the cognitive level of a 2 or 3 year old. She knows about 500 words including how to tell us what she wants whether it’s food, a blanket or a treat!
There are no drug solutions to get rid of her seizures and she’s had them daily most of her life. That’s approximately 25,000 seizures in her lifetime. A few years ago she was having a lot of seizures, including drop seizures which resulted in her breaking her legs, twice. In an attempt to find something that worked and to avoid the side effects of anti-convulsants which were causing her outbursts and erratic behaviour, my wife Jennifer and I decided to try medical marijuana in the form of brownies. We saw some relief early on with some days being seizure free and more motivation coming from her. After 5 years, we had to explore more treatment options as her erratic behaviour was back. We took her off medical marijuana and she’s back on an anti-convulsant. It’s what works now and we will continue exploring treatment options based on her needs as they change.
Today Stephanie is 26 years old and she’s got a great sense of humour. We still see about 1 -2 seizures most days, mainly partial-complex. She’s usually a happy girl and we help her stay motivated, engaged and encouraged every day with a few of her favourite things like food, family and friends, playing ball and going swimming where she mainly enjoys relaxing in the hot tub!
This October, Stephanie’s brother Michael and I (and our friend Kyle Simpson) are running the Half Marathon at the Scotiabank Toronto Waterfront Marathon in support of Epilepsy Toronto and in honour of Stephanie. Your donation will help Epilepsy Toronto run programs and services that help people and their families cope with the impact of seizures and live life to the fullest. Our family has supported and been supported by this agency for almost two decades and know first-hand the excellent work they do. Thank you for reading our story.
Link to donate: