I am running the 2026 Chicago Marathon to bring awareness to epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP)

My wife and I have two beautiful children. Logan our eldest and Lyla our youngest. Like most newborns Lyla enjoyed staring at large objects and following our voices. But at just four weeks my wife and I witnessed Lyla having a seizure. In a week’s time Lyla was diagnosed with epilepsy after having been admitted to the University of Iowa Stead Family Children's Hospital where she spent four days of testing and monitoring.

Her neurology team advised genetic testing to further diagnose why Lyla was having recurring seizures. In May of 2025, results showed that Lyla had a rare genetic disorder called KCND3. Individuals with early onset forms can present with neurodevelopmental disorder and/or epilepsy, preceding the onset of cerebellar signs and brain atrophy; while late onset forms can present with cerebellar ataxia, cognitive decline, neuropathy, and other movement disorders.

Variants in KCND3 have been reported in association with cardiac arrhythmias including Brugada syndrome, atrial fibrillation, and early repolarization syndrome in a small number of individuals with no reported neurologic symptoms, and have also been reported in cases of sudden unexplained death.

There are roughly one-hundred documented cases in the world for this condition and Lyla is the youngest case on record. When reading some of the symptoms that could also come with this, one that stood out was Sudden Unexpected Death in Epilepsy (SUDEP). As a parent, there is nothing worse than thinking that any day may be the day your child might experience SUDEP, so when choosing a charity to run in the 2026 Chicago Marathon to bring more awareness to epilepsy and specifically SUDEP, the Danny Did Foundation resonates close to my heart.

I hope with each dollar raised and every mile ran, I can help families like ours know there is support out there like the Danny Did Foundation and that living a long, loving and fulfilled life with epilepsy is possible. Thank you in advance for whatever your contribution may be.

- Nick

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.