The Danny Did Foundation is hosting a November Awareness Month
Campaign, http://vimeo.com/30753232. The goal: to reach
15,000 Facebook fans to spread the word about SUDEP and for 1,000
people to donate $25 each to help provide seizure alarm monitors to
people who need them but can't afford them. To contribute, visit events.org/november.
Kids can get involved through the Bake for Danny Did initiative.
Supporters host a local bake sale, with the proceeds donated to the
Danny Did Foundation to continue to raise awareness of SUDEP.
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
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.
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