Fighting to Bring Attention to Epilepsy

On December 12, 2009, Chicago residents Mike and Mariann Stanton went to wake up their 4-year-old son, Danny. They found him blue in his bed.

They performed CPR and dialed 911, but it was no use. Danny had died after suffering from a seizure in his sleep.

The cause of Danny’s death was SUDEP, Sudden Unexplained Death in Epilepsy. Seizures kill more than 50,000 people each year—more than breast cancer—and SUDEP causes a portion of those deaths.

Danny had suffered only four seizures in his life that the Stantons were aware of. “The term ‘epilepsy’ was never raised to us nor, of course, was SUDEP,” Mike says. “We were told that Danny had a ‘childhood seizure disorder’ that he would likely outgrow. The fact that our neurologist never told us death was in the range of possible outcomes for Danny’s condition is maddening. Doctors have since told us it is difficult to talk about SUDEP when there is so little they can offer to combat it. Imagine if other deadly afflictions were addressed the same way.”

A month after his death, the Stantons established the Danny Did Foundation, whose goal is to prevent deaths caused by seizures. “I remember being in our bedroom the day after we lost Danny,” Mike says. “We were not saying much to each other, and then at nearly the same moment we both said that there must have been something we could have done. We decided that we would put together some sort of organization that informs parents of kids like Danny about the possible outcomes of a seizure disorder.”

One of the foundation’s goals is to urge the healthcare industry to provide parents of epilepsy patients with a medical device for home use that will sound an alarm when a child suffers a seizure. “These types of technologies do exist, especially in Europe. Our hope is that these devices become FDA approved and are then covered by insurance companies,” Mike says. “Our vision is that one day they will be as commonplace for seizure patients as inhalers are for asthma patients.”

Another goal is to educate the public about SUDEP. The foundation, in conjunction with the Epilepsy Foundation of Greater Chicago, has published 5,000 brochures about seizure safety, which they plan to distribute to ERs, pediatrician offices, and epilepsy centers throughout Illinois.

They also want politicians to increase funding for epilepsy research. From June through the end of July, they sponsored a nationwide letter-writing campaign urging the government to provide more financial help.

Some are doing more than writing letters. Amin Virani, a 26-year-old from Skokie who had never met the Stantons, learned about Danny on the foundation’s Facebook page. This summer, Virani, a DePaul graduate, went on a two-week, 1,000-mile bike trip around Lake Michigan to raise money and awareness for the foundation.

“Danny touched a lot of people while he was alive,” Mike says. “And he has touched so many more since his death.”

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