Everyone knew Ronnie Frame was living on borrowed time. Especially Steve Carr, his adoptive father.
Carr worked tirelessly for years with doctors all over Ohio hoping to find the right drug and the right procedure to reduce the continual, debilitating seizures that Ronnie suffered as the result of Lennox-Gastaut syndrome, a rare and severe form of epilepsy that Ronnie developed from an allergic reaction to a childhood vaccination. He had other serious health problems, too, but the seizures, from minor to grand mal, slammed him every day.
Carr, a retired teacher and former director of special education for South-Western City Schools, got custody of Ronnie when he was 10 years old after the boy’s mother died. Carr became his permanent legal guardian once Ronnie reached 18.
“He suffered so much. When you see someone you love suffering, you will do anything,” Carr said. “I knew we were running out of time.”
Ronnie’s health deteriorated as he grew into adulthood. The seizures worsened, the good days became fewer, and the drug options dwindled.
Earlier this year, Carr heard about something new, Epidiolex, an experimental drug using cannabinoid ingredients — essentially a form of medical marijuana. A new law made medical marijuana legal in Ohio on Sept. 8.
But being legal and being available are different things.
The state has not released an estimate of how many people in Ohio might be eligible for medical marijuana. However, the group Ohioans for Medical Marijuana estimated the number of potential patients at 188,000.
GW Pharmaceuticals, the manufacturer of Epidiolex, announced in June that studies showed it was effective specifically for patients with Ronnie’s condition.
“Epidiolex has the potential to provide a robust and clinically meaningful reduction in seizures in this highly treatment-resistant population,” said Dr. Linda Laux, director of the Comprehensive Epilepsy Center at Ann & Robert H. Lurie Children’s Hospital of Chicago. “I am excited about the prospect of Epidiolex being made available on prescription in the future and believe it has the potential to make an important difference to the lives of many patients.”
It was encouraging news, but Carr knew that even if it worked, Epidiolex would not cure Ronnie. Nothing could do that. However, it might reduce the number and severity of his seizures and increase his quality of life.
Carr said he was willing to help Ronnie in any way he could, even if it meant risking breaking the law by crossing state lines to get the medication. But Carr said he could find no Ohio doctor willing to take the risk of writing a recommendation for the medical-marijuana drug. The State Medical Board has since clarified its stance somewhat but still suggests that doctors who recommend medical marijuana consult an attorney first.
On Sept. 25, Ronnie died. He was 42 years old.
Medical marijuana had been legal in Ohio for less than three weeks when Ronnie died. However, the rules, procedures, certification and licensing are still in the works. Ohio patients probably won’t be able to get any form of the drug until 2018.
“It’s taking so long,” Carr said. “There’s families that need this.”
State officials recently proposed the first set of rules for marijuana cultivators. Still to come are rules for processors, testing labs, dispensaries, physicians and pharmacists. Justin Hunt, chief operating officer for the state medical-marijuana program, said much work remains to be done.
“It takes a lot to build an industry from the ground up,” Hunt said at a meeting of the Medical Marijuana Advisory Committee.
State Rep. David Leland, D-Columbus, said he was undecided about House Bill 523, the medical-marijuana legislation, when it was being considered this year.
“I think there are provisions in it that are just bad,” Leland said.
Then he talked to Carr and heard Ronnie’s story. “When it came time to vote,” Leland said, “I remembered the conversation I had with Steve about his son. That’s what made me vote for it.”
Christy Allen, a home health-care provider who looked after Ronnie for the past seven years, described him as “a big, sweet, innocent teddy bear. He didn’t talk, but he could communicate with his eyes. He let you know what he wanted.”
“He had the brightest blue eyes,” she said. “You felt like you could see into another universe.”
Allen was there when Ronnie died, holding one of his hands as Carr held the other. She spoke at his funeral, calling him “my boy.”
“I learned from Ronnie not to sweat the small stuff,” she said. “Ronnie would have a seizure and get up and keep pushing.”
Carr said he misses Ronnie very much but learned so much from the son who could not talk.
“He was just a precious spirit,” Carr said. “He was my hero. I don’t know anyone who suffered more and kept on going.”