How To Support People With Epilepsy—On Purple Day And Every Day

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TW: seizures, SUDEP, child loss

On an ordinary day in 2009 I tucked my toddler in for her afternoon nap. My busy three year old seemed more tired than usual. I thought it was due to a hectic morning of appointments. When her nap seemed to last longer than usual, I peeked in to check on her. I stepped inside her room and the first thing I noticed was vomit on her crib rails. Avery was pale, almost blue. I put my hand on her chest and couldn’t feel the rise and fall of her breath. I picked her up and she hung limp in my arms as I dialled 911. I must have screamed because our son, six years old at the time, came out from his room and was looking at me, terrified. 

“In a few minutes some fireman are going to come through the door. They’re going to help us.” I told him.

I didn’t understand what was happening. I’d never seen her (or anyone) have a seizure. Epilepsy wasn’t even part of Avery’s chromosome disorder diagnosis at this point.

I told my son to keep out of the way and that everything would be okay.

When paramedics arrived my little guy was standing in the hallway, pressed up against the wall as flat as he could be. He said, “I’m okay mummy. Don’t worry about me. Just please let Avery be okay.”

I’ve replayed that scenario in a loop in my brain for a decade.

We soon learned that Avery had experienced a status epilepticus seizure of which she would have several more. Status epilepticus seizures are the kind that may not stop without medical intervention. They can last thirty minutes or more and they often did. 

Over the next few years we worked with doctors to find the best way to manage Avery’s seizures. Eventually, we found the right combination of medications that continue to work well for her. We were lucky. Not everyone is.

Once the seizures were finally under control, the fear softened.

But it’s always there, just under the surface. That’s the thing about the unpredictable nature of epilepsy—you can never fully let down your guard. As Avery enters puberty, we’re watching her closely. As hormones alter brain chemistry, catamenial epilepsy can can rekindle dormant seizure activity.

We’ve met many families affected by epilepsy. Some have lived with the disorder since infancy. Some were diagnosed in their teens, some as adults. Epilepsy doesn’t discriminate by age, gender or ability.

Epilepsy has taken people from us.

SUDEP AWARE

Explaining to our daughter that her friend was suddenly gone was difficult. She couldn’t understand how this was possible. When I told her, she sobbed and banged her fists on the kitchen island pleading for it not to be true.

To lose a child is unimaginable. 

Yet, as a parent of a child with epilepsy we can imagine it. Because many of us have come close. We’ve watched a child turn blue or lie unresponsive. We try not to imagine it, but we do it anyway.

Avery is among the over 300,000 Canadians, who have been diagnosed with epilepsy. Another 15,000 will be diagnosed this year. The seizure inducing condition is a neurological issue affecting the brain and is much more common than people realize. Epilepsy affects one in every 100 people worldwide.

During March, Epilepsy Awareness month, people are encouraged to learn more about the condition and to possibly donate to help fund programs and research.

How Can You Help?

💜 Participate in fundraisers that support epilepsy organizations and research.

💜 Follow and support content creators who have and/or educate about epilepsy.

💜 Learn what to do if somebody is having a seizure. And what to do after.