HERCULANEUM, Mo. — A state law in Missouri bears the name of a charming little boy from Herculaneum. His name is Will Capps, 4. He suffers from a rare form of epilepsy.
“Will’s Law” may be a lifesaver and not just for Will. He has seizures daily. Most are mild. Most people don’t notice them. However, he has a relatively frightening seizure every other day on average, according to his mom.
He recently had one of those on the playground of his preschool, the Taylor Early Childhood Center in the Dunklin R-5 School District. His mom, Kayci, was trying to attend a first-grade field trip for one of her two other children but always, she kept her cell phone ready and stayed within a 10-minute radius of Will’s preschool.
“I cried on the way (to the preschool),” she recalled. “By the time I got there the seizure had stopped. The nurse had gotten it to stop and he was sleeping.”
Will has a rare, catastrophic form of epilepsy known as Dravet Syndrome. His 11 daily medications cannot stop the seizures and shaking that can last an hour or more and threaten his life.
Dravet Syndrome can’t stop Will.
When a Fox 2 News crew visited Will at home a few days later, he immediately grabbed the hand of Fox 2’s Andy Banker and showed Andy around the house.
Will also has level 3 autism which impacts his ability to speak, his mother said, but his loving demeanor says more than words can.
His mother has helped the preschool staff train for Will’s seizures, but Will won’t always go to the same school and an estimated 8,300 Missouri children suffer from seizure disorders.
His mother learned of similar laws in other states and got the attention of Senator Doug Beck, a Democrat from South St. Louis County. He sponsored ‘Will’s Law’. It requires training for school staff and individual health care plans for all of those kids. In a legislative session marked more by bickering than a bill passing among Republicans who control both houses, ‘Will’s Law’ somehow squeaked through.
“They kind of worked out their differences and it made it through the house, through the Senate with, I think, 27 hours to spare. So, it was very, very stressful,” Kayci Capps said.
The lawmakers figured out what Will’s family and preschool already knew: kids like Will are worth it.
“Yeah,” said Charissa Kappler, Director of the Taylor Early Childhood Center. “Moms and dads have a very hard job … for our students anything we can do to improve their quality of life, how they go through the day, keep them safe through the day so that they can engage in learning, it’s worth it.”
“(Will) lights up the room. People just love him,” his mom said. “I think seeing his face attached to this bill, I think anyone would do anything for that little kid.”
‘Will’s Law’ now awaits the governor’s signature.