My only child, Mikey Thomas, died on November 26, 2016, of SUDEP. He was 25 years old. Having been diagnosed with epilepsy at the age of 8, Mikey lived very successfully with this disease for many years. He had been on different medications over the course of his lifetime. It was rare that he had more than one seizure a year, and many years he was seizure-free.
We saw Mikey on Thanksgiving and had a great time with him, watching him eschew turkey and the trimmings for two grilled burgers. He always did have unique tastes. When we got a call from the hospital on Saturday, we assumed we were going down to pick him up after he suffered a seizure at work, something we had done many times in the past. It was with great shock that we learned from the ER doctor that they were unable to get and maintain a pulse on him. After trying to revive him for more than an hour, they declared him dead.
In the weeks since his passing, I have learned so much about SUDEP, so much that I never knew before. My dear son had many of the risk factors for SUDEP, yet I had no clue. All of the years of attending neurology appointments with him did nothing to prepare me for this abrupt end to his life. My son had a great life. He was an artist, a kind person, and a good friend to many. I wish I could have protected him from SUDEP. I wish epilepsy had not taken him from me.
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