Posted Tuesday, July 29, 2014 -- 10:00 p.m.
Makayla Kuehn's favorite toy is a plastic vacuum.
Proudly, she showed it off today -- happy, and always smiling.
"She was born with a brain bleed, which is the reason she does have seizures," Stacey, Makayla's mom, explained.
That was four years ago, and when you look at Makayla now, you wouldn't think anything is wrong.
But her parents will tell you differently.
"You're constantly worrying no matter where you go, where's the hospital, do we have all our medication along," Stacey said, her husband Adam adding that "[they] can only give her rescue meds once, and [they] have to get to a facility if she continues to have seizures."
It truly is an ongoing struggle for the Kuehn family.
Makayla seizes frequently.
"Right now we're having one about every three weeks; it's definitely on the up swing," Stacey explained.
Makayla knows better than anyone else that there's something out there that could help.
"I need new medicine," she said, sipping on her chocolate milk at dinner.
It's called CBD Oil -- short for cannabidiol -- a cannabis extract that can potentially eliminate seizures.
Stacey says there is a roadblock though.
"In Wisconsin it's next to impossible to get CBD oil."
When Governor Walker signed Assembly Bill 726 earlier this year, it made CBD oil legal.
The Kuehns were there -- posed for a picture with Walker -- in light of what they thought could be the final big breakthrough.
Come to find out, the road ahead would be tough.
"The big roadblock is the provision that got added at the very end where it needs an FDA investigation license," Stacey explained.
She also said that major hospitals in Wisconsin are not applying for that license, making a fundamentally legal drug impossible to get.
A dangerous situation for Makayla -- because every seizure could mean death.
"It seems like nobody listens to the parents this keeps happening to," Adam said.
NBC15 reached out to neurologists at major hospitals in Madison including UW and St. Mary's, none could talk on camera.
Select lawmakers around the country are looking at making changes to federal law that would change the requirement of FDA license needed to prescribe CBD oil.