Rachel Stein

Rachel Stein's Fundraiser

Your gift will help protect kids with epilepsy.   image

Your gift will help protect kids with epilepsy.

Please help provide funds to purchase life-saving devices for children with Epilepsy.

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$2,180 towards $2,000

If I had to sum up what it feels like to have a child with epilepsy in one word, it would be “terrifying”. As a family, we have struggled with the unpredictability of Caleb’s diagnosis for five years. Our number one fear has always been SUDEP (sudden unexpected death in epilepsy), which will take the life of about 1 in 1,000 people struggling with this disease.


As a parent, I can tell you that nights are the worst, as we worry about whether or not Caleb is going to have a seizure, and possibly stop breathing, in his sleep. Until recently, we never knew that there were devices that could monitor Caleb’s oxygen and heart rate and alert us if there was a problem. The Danny Did Foundation helped us to choose the best device for his specific type of epilepsy, and even awarded us a scholarship to purchase it.

The Danny Did Foundation was formed after Mike and Mariann Stanton tragically lost their four year old son, Danny, to SUDEP. Since 2010, they have been providing doctors and the community with information about SUDEP, as well as providing kids like Caleb with grants for life-saving devices.

I am running the 2021 Chicago Marathon as a way to raise funds and give back to this wonderful organization so that they can continue to save children’s lives and provide peace of mind to so many struggling families. Please join me by donating whatever you can.

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 Foundation’s 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.

The Danny Did Foundation takes it's 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.