My daughter, Michaela, had her first seizure January 20, 2011. She was diagnosed with Juvenile Myoclonic Epilepsy in February 2011 after a EEG that shows irregularities. She immediately started on medication. She was 11 (almost 12). Days turned into weeks turned into months turned into years – 15 of them, every one riddled with hundreds of tonic clonic, absence, and myoclonic seizures. It was relentless. In 15 years, she only had 1 year seizure free. They labeled her drug-resistant epilepsy, intractable. In 2018 she had the VNS implanted and we saw some improvement, but still never seizure free for longer than a week. 
In 2021, Michaela found out she was pregnant. She had always wanted to be a mom, but, as we all know now, pregnancy can be dangerous in people with epilepsy. She and her partner decided to go all-in, and they had their sweet baby in July 2022. Delivery was traumatic. Michaela seized for hours. She had an out-of-body, near death experience, but eventually she delivered a beautiful, healthy little girl.
The next 2 years would be riddled with physical declines, cluster seizures, hospital visits, medicine changes, and VNS updates. Her seizures continued to get worse. In 2024, Michaela had the RNS implanted. After her brain surgery, we saw a stabilization in her seizures. Not as many, fewer clusters, but when she had then they were violent, and lasting longer by the day.
On January 27, 2026, Michaela had a nocturnal seizure at approximately 2:30 am and succumbed to her seizures at 2:47 am. She was 27. SUDEP took our baby, and we were stunned, heartbroken. Over the years, Michaela worked tirelessly to educate friends and loved ones and even strangers about epilepsy first aid, triggers, tried to make talking about epilepsy normal, reducing the stigma around seizures, and just altogether being an advocate. I was her partner in that.
This year, we are going hard to spread awareness, advocate, teach, and help others with epilepsy find resources and hope. Where we live, there isn’t a lot of resources for patients or caregivers. I plan on changing that in honor of our sweet girl. We hope to change the perception of seizures. All of this, so that when her daughter grows up, we can show her how her Mommy helped change the conversation surrounding epilepsy. Michaela’s battle may be over, but ours continues in her honor.