I am running for Sun, Soomin, Sophie and all those impacted by Epilepsy

If you know me well enough, you know my story and you know Sun's story. I am not shy to share - the ups and downs, because before 2004 I had no idea what epilepsy was. Awareness and education are the first step.

We have been living with epilepsy for over 21 years. I say "we" because epilepsy affects everyone in our family. It affects me as a caregiver, it affects our children as they live with the uncertainty around dad and the responsibility of caring for him when his seizures happen when they are with him, and it obviously impacts Sun mentally, physically, and emotionally.

What started off as a seizure at a wedding has turned into 6 brain surgeries, countless cocktails of medications, numerous hospital stays, emergency room visits and ambulance rides, talks with our young kids about daddy seizure protocol, tears, anxiety, fears ...and till this day Sun is still not seizure free. Yet, despite our challenges living with epilepsy daily, we are forever grateful and appreciative that Sun is alive. Danny, the boy named in the foundation I am supporting, is not and neither is Soomin, our dear friend. Both Danny and Soomin died of epilepsy (SUDEP - sudden unexpected death in epilepsy) and we know the scary reality that one of Sun's many seizures could also do the same to him.

That is why I am running my first marathon - to support the Danny Did Foundation, which is an organization that increases awareness about epilepsy and SUDEP. I discovered running as a hobby just last year after having gone through a very difficult year mentally, emotionally and physically caring for Sun and our kids when Sun had an unexpected brain infection. It's ironic that I was drained and burnt out yet I found a passion in running.

Running became my way of taking care of myself so I could better take care of Sun and my family (kinda like the airline safety video about putting your oxygen mask on yourself before helping others). My oxygen was low, I was running on fumes, yet trying to manage a demanding job, a deteriorating health situation, and two scared little kids. I ran my first "race" November 2024 (the picture on my page) which was a 5K turkey trot and set a goal to run my first half marathon in 2025. By the end of 2025 I ran 5 half marathons and set a goal to run a full marathon in 2026.

So cheer me on either live in Chicago or virtually on October 11, 2026 as I run for Sun, Soomin, Sophie and everyone impacted by epilepsy. Sophie is a sweet girl. Her story is hers to share but she has been a big inspiration to Sun. So cheer me on but more importantly, consider donating to the Danny Did Foundation. Supporting us is not limited to financial donations - you can support us by increasing awareness about epilepsy, sharing Sun's story, asking questions to educate yourself so you can educate others.

I forgot to mention - 4 ankle surgeries and all those months on the couch non-weight bearing, running down the street was nearly impossible for me just a few years ago

With love and thanksgiving

Amy

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.