Our son Bryan, age 41, shockingly died this past January 7, 2026 of SUDEP. Our hearts break to write his personal story for the CURE website on the SUDEP page. It is a page we had never looked at before. Now we are astounded to peruse the multitude of victim’s stories who succumbed to the same heartbreaking outcome as our beloved son.
Bryan was diagnosed with epilepsy in 1988 when he was 3 years, 4 months old – at a time when SUDEP was not recognized. His idiopathic intractable epilepsy led us to try numerous anti-seizure medication (ASMs) during his life, always with periodically dangerous side effects. His best success was on the ketogenic diet from ages 12-15. It kept him seizure free for the subsequent 16 years. That was a miracle then, and now seems even more incredible.
He lived a relatively independent life during those years, taking classes at community college, graduating from a 4 year life skills college degreed program, living in a supported group home, and “graduating” to living independently a few days a week. However, in 2018, once the seizures returned, they came back with a relentless, ruthless vengeance, despite more and new meds and reinstating the ketogenic diet. We lived with PTSD if we heard him shrilly cry out or the dog barked.
Depakote, the ASM Bryan relied on most of his life, now came as a double edged sword, bringing complications with blood sodium levels. We learned seizures could be provoked by low sodium and electrolyte imbalances. Despite all our effort to “rebuild the dam,” Bryan continued to incur 1-2 grand mal seizures annually. But coming from the multitude of them in 2018, that frequency seemed like pretty good control. We believed we understood Bryan’s vulnerabilities – low sodium, fatigue, sun, caffeine, illness, and electrolyte imbalances.
At age 40 in 2024, we threw him a celebratory party with all his friends and family. His brain had matured. And we thought – with the help of our wonderful neurologist – that we had seizures under control. We continued to exercise every precaution we knew to keep him seizure free as he lived and worked. Nonetheless, he suffered occasional breakthroughs, and his third seizure in the year, 2025-2026 shockingly took his life.
Bryan lived a life of purity and commitment to his own health, balancing it with sports, work, hobbies and his dog. He deserved so much longer of a life. Now we struggle daily from losing him, and the immense hole in our family and our lives he has left behind. We share his story because we believe parents, caretakers and loved ones need to know the dangers and risks of seizures. We did everything we knew to avoid them. But now we wonder, was there anything more we could possibly have done to protect him from his seizures? Because once this one started, it was irreversible and fatal.
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