In Every Mile: Honoring My Mom and Protecting Those Living with Epilepsy

Running has always been something I love, and for years I have dreamed of running one of the World Marathon Majors. By running the Chicago Marathon, I am completing something I never truly believed I would be capable of. This race represents not just a physical challenge, but a personal milestone that once felt out of reach.

My reason for running goes far beyond my own goals. About two years ago, my mom was diagnosed with epilepsy after a nearly fatal seizure while she was at work. She had a sudden grand mal seizure, fell onto concrete, and coded. If it were not for her quick acting boss and coworkers, I would have lost my mom that day, not from the seizure itself, but from the fall and loss of oxygen. That moment changed everything.

After that episode, it took nearly a year for anyone to fully understand what was happening. Navigating the medical system was frustrating and overwhelming, and it was shocking to realize how little is truly understood about seizures and epilepsy. The uncertainty was exhausting and frightening for our entire family.

My mom is a fiercely independent person. She supports herself and lives alone. After her seizure, things like working, driving, and staying active felt suddenly ripped away from her. There are so few resources for people who live alone with epilepsy, and watching her lose pieces of her independence was heartbreaking.

About six months after her first episode, she had another seizure, and this time I was with her. She had mentioned she was not feeling well, but she was hosting a Super Bowl party and in her true fashion was trying to push through.

Most of the guests were in the living room while I was with her in the kitchen watching her standing at the stove when I noticed her stare going vacant and her inability to complete any task, she was going unresponsive.

It felt like I was losing her in front of me. Panicked, I put her arms around me and guided her to a stool near the counter, cupping her face in my hands I started to beg her “just answer me mom, just answer me”. I did not know what was happening, only that she was not responding to me and her eyes were a million miles away.

Then she began having a grand mal seizure while I was holding her face in my hands. By what feels like divine intervention, I was there to cradle her to the ground and get her onto her side. I screamed for someone to call 911 and kept praying out loud, “come back to me mom.” It was after this seizure that she was finally diagnosed and put on medication. From that moment on, I lost sleep worrying about her being alone and struggled with how to give her freedom while feeling constant fear about her safety. Two years later, I still struggle with that and I am forever grateful for medication keeping any grand mal seizures at bay.

I am running for my mom and for everyone impacted by epilepsy, including those who live with seizures and the family members who love them. I hope that each mile I run helps raise awareness, improve safety, and support those who deserve to live full and independent lives.

About Danny Did Foundation

Founded by Chicago parents Mike and Mariann Stanton in 2010 after the sudden death of their four-year-old son Danny, the Danny Did Foundations primary mission is to prevent deaths caused by seizures. The Foundation advances public awareness of epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families affected by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths.

Epilepsy affects 3.4 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. But what few people understand, including many people with epilepsy, is that seizures can be fatal. More people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined. In addition to deaths caused by drowning, other accidents, and status epilepticus (prolonged seizures), thousands of deaths occur annually from SUDEP, a fact that is little known and too rarely addressed by medical professionals and in public discussions of epilepsy. Danny Did Foundation takes its name from the last line of Danny Stanton’s obituary, written by his dad: “Please go and enjoy your life. Danny did.” We celebrate Danny’s spirit in every child and family we reach.