It's been 23 long months for one Chicago family, but this Thanksgiving, the Stantons will pause and reflect on what they've accomplished in their little boy's name.
Danny Stanton was 4 when he died in his sleep Dec. 12, 2009, during a seizure, a possibility his family never imagined or were warned could happen. It is called SUDEP--Sudden Unexplained Death in Epilepsy--and his family has worked hard to make sure what happened to their family doesn't happen to others.
The statistics are scary: 50 million people suffer from seizures, with 45,000 children diagnosed in the U.S. every year. Fifty thousand people die from seizure-related deaths annually. While other organizations raise money for treatment and a cure, the Stantons decided to focus their efforts on making a practical difference, or as Danny's uncle and foundation Executive Director Tom Stanton says, to help a family get to the next day.
So far, the Danny Did Foundation has provided 67 Emfit seizure alarm monitors to families who can't afford them in 30 states and facilitated clinical trials on the monitor at three Chicago hospitals,with the hope that it one day lead to FDA approval and insurance coverage. It also has provided a grant to support clinical trials of a SmartWatch wristwatch device at Stanford University, which alerts caregivers via smartphone of a seizure.
The foundation also created and distributed 20,000 seizure safety brochures to families, hospitals, doctors and epilepsy organizations. As the Stantons found, this information was not readily available to families.
"It makes you take a step back and you think not only how many lives he has changed, people with and without epilepsy, but how many lives has he saved already," Danny's mom Mariann Stanton says about the accomplishments so far. "… He's changing people's entire lives, the way they live and he's 4 and a half years old."
From the start, Mariann Stanton says she has tried to keep life as normal as possible for their other children - Johnny, Mary Grace and Tommy. They talk about Danny a lot, she says, and they are involved in all of the activities for the foundation. It's still hard, she says.
As for her? "A part of him is forever a part of me… I am just walking slowly through life, I'm just trying to walk forward and not backwards right now."
Tamara is the editor of Chicago Parent and mom of three.
See more of Tamara's stories here.