Emily’s Story

Emily had her first seizure in the middle of the night at 4 months old. It lasted almost 1 hour despite rescue medications in the ER. She was initially thought to have sleep myoclonus; involuntary muscle twitches that occur while sleeping. When it happened a 2nd time 4 months later while she was awake bouncing in her jolly jumper we knew there was something much more serious going on. 

Since then Emily has had 36 more seizures and has been diagnosed with Dravet Syndrome. She's now 5 years old and in Kindergarten in a special assistance class. 

We were very fortunate to meet Dr. Evan Lewis in 2020 who started Emily on CBD oil. Since then Emily's seizures have reduced from 5-10 times/year to 2-3 times/year. 

A cure for Emily's epilepsy would be life changing for our family. We can never relax as we always have to be vigilant and ready with rescue meds. We need to be within a 30 minute drive to an emergency department since Emily's seizures usually are long and can affect her breathing. This means our dreams of canoe camping, hiking and travelling as a family are gone, at least for now. 

We greatly appreciate and support Epilepsy Canada for everything they do to help the world get closer to a cure for epilepsy. 


The courage of those living with epilepsy,

inspires us and fuels our journey.

 

Your gift will help us to continue on the road toward an epilepsy cure.

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Gail’s Story

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Sheena’s Story