Remembering Jessee

Michelle is sharing her story about losing her son Jessee due to Sudden Unexpected Death in Epilepsy
By
Michelle Aure
Parent of a Child with Epilepsy
Tuesday, January 11, 2022

My son Jessee was 8 years old when he was diagnosed with epilepsy. In my wildest dreams, I never thought my son would have to live with this horrible disease, or that it would one day claim his life just before his 24th birthday. I never realized how devastating epilepsy could be until I lost my son.

I did not know much about epilepsy then, but Jessee would tell me he was going to grow out of it because that is what some doctors told him might happen. As a parent, I felt so helpless seeing my son have seizures and there was nothing I could do to make them stop.

Jessee was seizure free for most of high school, but as he grew older, the seizures became more frequent and worse. He had plans to go into military service and he was so disappointed that he could not.

He had a challenging time keeping a job. One day, he called me crying and said, “Mom, I just want to be normal.” It broke my heart into a million pieces. If I could have taken his pain away from him and taken it on myself, I would have.

Jessee was waiting to see if he was a candidate for responsive neurostimulation, but on Mother’s Day 2021, he had two seizures. He was living with his fiancée, his son, and his fiancée's mother at the time. After his second seizure, he was having a tough time waking up, so an ambulance was called.

A couple of days after those seizures, Jessee woke up before anyone else and went fishing. No one knew he left the house, but he was not answering any texts or calls from his fiancée or anyone else, so we began searching for him.

After several hours, Jesse was found in the lake by my husband and sister. We do not know exactly what happened, but the autopsy revealed that he died from Sudden Unexpected Death in Epilepsy (SUDEP).

It is my hope that we can find a cure for this horrible disease that takes our loved ones.

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Reviewed by: 
Sara Wyen

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