Missouri schools will soon become a
safer place for students with seizures.
Governor Mike Parsons signed a new bill
into law requiring school nurses and staff
to follow personalized response plans.
Our political editor, Mark Maxwell,
is here to explain how it all started
with one mother who took her story
to Jefferson City.
And Will's law will prepare
teachers and protect students with
seizures in Missouri classrooms.
We recently met Will and his mom,
Casey, at his daycare and quickly
learned how their families
fight with a rare aggressive,
often deadly form of epilepsy,
upended their lives and
altered their expectations.
When Will was born, I was still like
as soon as he's able to get out of
a crib and a toddler bed, bunk beds,
and then he started having seizures,
a devastating diagnosis dashed Adam
and Casey Cap's dreams 5. Years ago
I pictured his life looking very different.
They got a service dog to help detect
Will's seizures and adjusted to
the challenges of life at home. But
now leaving the House for daycare or
school brings other complications.
I was getting ready to walk out the
door and they called me and I was
having a seizure and I cried the
whole way here because my life is
a balance of taking care of will,
but also being there for my other children
today. Will's mom relies on
experienced nurses and staff.
The Taylor Early Childhood Center,
but in other settings
will is a lot of people's first seizure that
they see seizures make people very nervous.
They want to help, but they don't know how.
I absolutely understand the
being nervous part wherever
will goes at school, his aide
Kylie Holder goes with him.
When Will starts his seizures I will get
him comfortable and I will open this up
and he has a magnet inside his chest.
And I will take out this little watch.
Kind of looks like an Apple Watch
and you rub it on his chest.
Will suffers from Dravet syndrome,
a rare form of aggressive epilepsy.
There is no cure, but there are ways
to care for him in a safe environment.
He is just like any other
four year old child.
He is obviously playing and he loves
toys and he loves snacks while
Will's illness is rare,
seizures can be far more common.
A CDC report found 470,000.
Network and children living with seizures
and not a lot of people understand epilepsy
now. A mother's love for her son is
making classrooms safer for kids with
seizures across the entire state.
But I've I've kind of turned that sadness
into fierce advocating for Dravet syndrome
for epilepsy in general.
Caps persuaded Missouri lawmakers
to require schools to form a
medical plan and train teachers
how to respond in a crisis.
But there are other lessons learned in those.
Harrowing moments of uncertainty. My son
has been intubated 10 times.
All ten of those times.
We thought that this might be
the seizure that ends his life.
And to see your child or
your brother go through that
again and again.
Whatever life just stops.
In that moment, whatever you
were doing stops. It's in
those moments when Will's Big Brother
finds ways to brighten his darkest days.
He is also such an empathetic person.
Does it see people with disabilities
as being different or less?
He just talks to them,
even if they're nonverbal like
he would any other kid. And
while will may not talk like other kids
his age, he sure can communicate a moving
reminder to love those you hold dear
our family as a whole.
We don't take anything for granted.
Even after all he's been through,
will is fearless.
He'll just walk right up to
strangers and give them a big hug.
Now there's a law with his name on
it that could help save the lives
of other kids he's never met.
It's no easy task to change state laws
and but you can never bet against
a mom looking out for her son.