I Never Thought SUDEP Would Happen

Chris' eJourney of SUDEP shared by Amy Dillard
Amy Dillard
Parent of a Child with Epilepsy
Wednesday, October 13, 2021

My motherhood journey started when I had my son, Chris, at the age of 18. Christopher had his first seizure when he was 3 ½ years old, we were in a car on the way home from visiting a relative. He was in his booster seat, and I thought he was choking from the sounds he was making. His lips turned blue, and it looked like he was not breathing. I was able to flag down someone who was passing by, and they called 911 and the ambulance got him.

We were referred to a specialist and soon after he began presenting symptoms of Doose syndrome, a rare form of early childhood epilepsy.

Chris continued to have seizures, and learned to live with multiple types of seizures throughout his life. After I was married and had more children, we all learned how to accommodate Christopher. By the time he was a teenager, we were more focused on his behaviors because of his cognitive processing disability and medication side effects along with fighting insurance companies for approvals and dosages.

I think if we had more time, his treatment might have been more successful because new things are happening every day.

We tried our best to make sure Christopher enjoyed the life he had until he passed away at 18 from sudden unexpected death in epilepsy (SUDEP). I guess it had always been in the back of my mind that this could happen, but I never thought it really would happen.

Epilepsy can affect anyone, and it comes with a lot of challenges. The most difficult part as a mother is not being able to help your child, seeing the side effects of the medication, and prevent a seizure.

Not everyone gets to know the 'why' of seizures and finding the right treatment takes time — if there is one. A lot of people will try to help and give advice from what they know about epilepsy and treatments, but more than likely, you have already tried most of them. The best thing to do is smile and kindly let them know that epilepsy effects everyone differently.

For me, connecting with the local Epilepsy Foundation in Iowa really helped. When I found them, they gave me so much support. It was validating to be heard by people who know exactly what I’m going through.

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Reviewed by: 
Sara Wyen

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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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