By Matthew Prosser
March 27, 2015 at 1:30 a.m.
Jon Eric and Rachel Johnson are like a lot of parents who want what’s best for their children, and are willing to do anything to help their little ones grow.
But for Lleyton Johnson, 6, the challenge is one that has stumped even medical experts.
Lleyton has a seizure disorder that has prevented him from reaching the developmental milestones most young boys reach. He cannot sit up, crawl, talk or eat on his own.
Rachel Johnson said Lleyton has frequent seizures — about 20 to 30 per day — that force him to rely upon his parents for everything.
“His most recent MRI shows scarring on his brain due to the amount of seizures he has,” she said.
The couple have taken Lleyton to a number of doctors and specialists, and their son is prescribed five medications that are taken four times a day. But it’s a temporary treatment, and one that’s limited in its effectiveness.
“The neurologist told us Lleyton will never be seizure-free on prescription meds,” Jon Eric Johnson said. What’s more, some prescriptions have side effects so severe and numerous that the couple doesn’t dare risk their son’s health.
“So we’re running out of options,” he said.
One new option has given the family a glimmer of hope: a newly developed treatment called Charlotte’s Web that some experts in the field of epilepsy and seizure disorders believe could help Lleyton.