Shining a Light on SUDEP

Kathryn Hermie shares her daughter Emmery's e-Journey
Kathryn Hermie
Parent of a Child with Epilepsy
Thursday, October 28, 2021

My daughter, Emmery, was diagnosed with benign rolandic epilepsy in August 2016 when she was 7 years old after experiencing a grand mal (tonic-clonic) seizure.

We went to a children’s hospital to see a neurologist who put Emmery on many different medications to help control her seizures; she was seizure free from August through December. However, things changed horribly soon after that. On December 9, 2018 Emmery died from sudden unexpected death in epilepsy (SUDEP). She was 9 years old.

Emmery had hopes and dreams like any child her age. She was creative, imaginative, loving and kind. SUDEP took her away from us, and we are forever heartbroken. We were never told about SUDEP. If we would have known, we would have done many things differently.

We would have gotten second opinions, and talked with our doctors about the risks of epilepsy, especially regarding SUDEP.

Now, we have gained so much knowledge about SUDEP and we have found support in hearing other people's stories.

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Reviewed by: 
Sara Wyen

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