It took enough of my life. On March 7, 2027, I’m running the LA Marathon for CURE Epilepsy — because the chains don’t get the last word.
Kevin’s story
When I was young, life threw me a curveball I never saw coming — weakness down the right side of my body. My parents were incredibly concerned, so we went straight to the doctor. After MRIs, CT scans, and more, I was wheeled into the operating room to see if I had a tumor in my brain — which I didn’t, thank God!
After all those tests, they decided I had cerebral hemiatrophy. I was eight years old. In plain English: one half of my brain is smaller than the other — “hemi” means half, and “atrophy” means that part of the brain didn’t grow or stay as large as it should. That difference on one side of the brain is what set the stage for everything that came next. A few years later? Oh man — this is where the fun begins.
The first big one
I had a massive seizure and was in the hospital for a few days to recover. Throughout my life until I graduated high school, I was having focal aware — or simple partial — seizures. In plain English: a focal aware seizure starts in one area of the brain, and you stay awake and aware while it’s happening — your body or senses may act up, but you’re still “there.” It didn’t bother me at all, because I did not know that I was having seizures.
Community college
In community college I started to have generalized tonic-clonic seizures. In plain English: these are the big ones people usually picture — your whole body stiffens (tonic), then jerks (clonic), and it involves both sides of the brain. You lose awareness. It’s intense, scary, and nothing like the quieter seizures I’d had before. After seeing my neurologist in my hometown, I was still having breakthrough seizures.
After much contemplation, I decided to go down to UCLA Medical Center. UCLA’s Neurology & Neurosurgery department routinely ranks among the top 10 in the nation and #1 in Southern California. I was instantly into telemetry so the doctors could find the focal point of my seizures. Then I was in consultation with a surgeon to take a part of my brain out.
2017
In 2017, I went all in. Surgeons performed a left anterior temporal lobectomy — they cut out part of my brain in a desperate, calculated fight to stop the seizures. For a moment, it felt like the war might finally be over.
Then, a few months later, lightning struck again: a breakthrough seizure. Hope cracked. The operating room hadn’t been enough. Back to the drawing board.
2019
In 2019 I had a vagus nerve stimulator put in. It helped a little, but I was still having breakthrough seizures. Now that I had a resection and a VNS, the big guns were out to play.
2022
I was done waiting for epilepsy to decide my life. DBS was next — and I chose it on purpose. In consultation with my surgeon, I committed to putting two deep leads in my brain. In 2022, I walked into that operating room ready. This was the line I would not retreat from.
Then came the long fight after the fight: nearly four years with my doctors and the team at Medtronic, refusing to quit until we found a golden setting. A few months ago, we locked it in — a slow pulse throughout the day, 24/7. I stayed the course. And it held.
The hard truth
What it’s like to have a seizure is terrifying. You are hopeless. You cannot control your body, and your mind is racing because you are fearful of what will happen. You know that you are going to have a seizure — and there’s nothing you can do about it.
Where I am now
Now, I am running the LA Marathon. I am still having breakthrough seizures about once a month or so — but the sting isn’t there anymore.
The chains of epilepsy that had bound me for so long were broken. I no longer fear having a seizure. It’s just the way my life is.
I am so thankful that I have an awesome family that has supported me throughout this long process.
Another fight I won
Epilepsy wasn’t the only weight I was carrying. For a long time my body felt like another chain — heavy, slow, and hard to trust. At my heaviest I was 368 pounds. Every step took more than it should. Every seizure recovery felt harder. Clothes, chairs, flights of stairs, the quiet math of what I could or couldn’t do — it all added up. I was surviving. I was not free in my own skin.
So I decided to change that, too. Not overnight. Not with a miracle. Over three years I showed up for myself the same way I showed up for surgery, for programming appointments, for the long haul of treatment: one hard day after another. I learned what it meant to be hungry for a different life and to keep going when the scale barely moved. I learned that discipline isn’t loud — it’s quiet, and it compounds.
Pound by pound, the number came down. Months turned into years. The mirror started telling a different story. People who hadn’t seen me in a while did a double take. More than that — I did a double take. I could move again. Train again. Believe that a marathon wasn’t a fantasy reserved for someone else’s body.
Today I stand at 214 pounds. That’s 154 pounds gone — more than the weight of a whole person lifted off my frame. I didn’t just lose weight. I took back miles of my life. The same resolve that walked me into operating rooms is the resolve that got me here: lighter, stronger, and lining up for 26.2 with Team CURE Epilepsy.
Epilepsy tried to write my limits. The scale tried too. I’m still rewriting both.
The weigh-ins — Aug 2023 to Aug 2026
Hover any dot for the exact date and weight — from 368 lb on Aug 9, 2023 to 214 lb on Aug 26, 2026.
March 7, 2027
I’m running the ASICS Los Angeles Marathon with Team CURE Epilepsy — people with epilepsy, caregivers, researchers, and families who refuse to accept “this is as good as it gets.”
CURE Epilepsy funds patient-focused research toward a cure. My story is one of many. I’m raising $3,000 for Team CURE Epilepsy — if you’re able, please donate and help me get there.
You are not alone
Fear shrinks when knowledge and community show up. These organizations offer education, advocacy, research, and ways to connect with people who get it.