Scarlett Leisure’s 3-year-old daughter, Savannah, was born with a rare disorder that causes what Leisure calls a “catastrophic form of intractable epilepsy.”
“There’s only roughly less than 100 girls in the world with the disorder she has,” Leisure said.
Leisure said seizures were the norm during the first eight months of Savannah’s life.
“She was on Topamax, Keppra and Phenobarbital,” Leisure said. “She was lifeless.”
Then, Leisure started hearing about medical marijuana to treat seizures in kids.
Now, Savannah takes a legal oil derived from marijuana called cannibidiol, or CBD. Leisure also gives Savannah small amounts of THC, the ingredient in pot that’s been illegal at the federal level for decades.
Leisure doesn’t care. All she knows is that her daughter’s seizures have become few and far between.
“We were told she’d never walk, and she’s walking,” Leisure said. “It’s life-saving medicine. It’s why Savannah is here today, why Savannah is functioning, why she’s playing, why she laughs. It’s, yeah, it’s everything, the reason she’s living.”
But even though Ohio’s medical marijuana program is required to be up and running by September, Leisure and Savannah’s dad are leaving Friday to drive to Colorado, where pot is legal.
Leisure calls her family medical refugees. She wants to make sure Savannah has a steady supply of medical marijuana.
She’s also worried about staying in her Highland County home, saying members of the medical community in Greater Cincinnati have threatened to remove Savannah since she no longer takes anti-seizure drugs.
“The fact that they would even threaten that is crazy because I would do anything to make sure Savannah has the best life she can possibly have,” Leisure said.
Savannah and her parents are headed to Colorado Springs, where people dealing with similar medical issues have formed a community to support one another. She said an organization called the Flowering Hope Foundation has provided helpful information ahead of the move.
Going to Colorado will not be easy for Leisure because she’s leaving her three young sons behind. They will be staying with Leisure’s mom and her sister for the time being.