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Purple Peace Foundation, KC epilepsy advocates hopeful MO Gov. Parson will sign 'Will's Law'

'Having the knowledge can set the tone'
Seizure Safe Schools
Posted at 10:36 PM, May 15, 2022
and last updated 2022-05-16 07:12:34-04

BLUE SPRINGS, Mo.  — Most parents can hardly imagine sending a child to school knowing they could have a seizure at any moment, but that's what one Missouri mom had to do. However, the school had no action plan for her son, Will.

Senate Bill 710, known as "Will's Law," would require school nurses in public and charter schools to develop individualized health care plans for students with epilepsy.

The bill is awaiting Missouri Gov. Mike Parson's signature.

Kansas City-area epilepsy awareness group Purple Peace Foundation says this bill is necessary.

RELATED: Purple Peace Foundation opens new facility after 10 years on Epilepsy Awareness Day

Holly Brady, founder and president of Purple Peace Foundation, knows how serious seizures can be because of her daughter Amanda.

“Amanda was born in 1997 and was diagnosed with epilepsy when she had her first seizure when she was about 10 months old,” she said.

As a mother, Brady worried about who would take care of Amanda in school.

“What happens when your teacher is absent and they have a substitute that knows nothing and there is nothing on file about it?” she said.

Sadly, Amanda died from a seizure at 13 years old. But before her death, for the first time, a school created a plan to keep her safe.

“Amanda had a seizure right at the beginning of her eighth grade school year, a few weeks before she passed away in September, and she was on the school bus. That plan was in place," Brady said. "She was on a special needs bus, that plan was in place, so that school bus driver knew to call the school immediately."

Stacey Perry, community outreach coordinator for Purple Peace Foundation, was never given such an opportunity.

“I was diagnosed with epilepsy when I was four years old, and I was originally diagnosed with what they call absence seizures, which is what they call when you just stare off into space," Perry said. "In fourth grade, I had one of these absence seizures. I had a very long one. I had no idea that I’m having it, and I don’t know until I’m, in essence, waking up from it to my teacher yelling at me.”

Perry said that moment was unforgettable and attributes the lack of knowledge from her teacher as a clear example of why Will’s Law is necessary.

“That teacher needs to understand when she sees a kid just staring off into space, they aren’t necessarily misbehaving, and if those teachers understand those things are happening, they can catch something before it’s a bigger problem,” Perry said.

If signed by Parson, Will's Law would ensure schools are kept seizure safe, an effort Perry believes will do more than save a life.

“Having the knowledge can set the tone for everything," Perry said. "Having the knowledge is how the students will react to that child, and as that child wakes up and becomes more conscience, it will help that child and how they feel about themselves."