June Jessee has lived with seizures, dozens almost every day, for her entire 23-month life.
After other options failed, a neurologist recommended a hormone treatment.
“The doctor told me it could kill her — but he was still recommending it,” said June’s mother, Genny Jessee.
June was diagnosed early on with infantile spasms that have left her developmentally like a four-month-old, her mother said. June’s not yet crawling, doesn’t typically sit up and has trouble sleeping because of the seizures, which intensify when she’s drowsy.
“The brain isn’t making the connections,” Genny Jessee said. “It must be so hard to understand what’s going on when your brain is constantly hitting the pause button.”
The hormone treatment didn’t work. Then the family turned its attention to a promising new therapy using an oil derived from marijuana. But the treatment is illegal in Missouri.
When the Jessee family learned the therapy is legal in Colorado, they decided to leave their home in Brentwood and move there.
June’s father, a lobbyist with the St. Louis-based law firm Bryan Cave, mentioned the move to a friend, state Rep. Caleb Jones, R-Columbia. Jones asked what he could do to help.
Change the law, Matt Jesse told Jones.
That exchange led Jones to sponsor a bill passed by the Missouri House last week that would allow patients such as June access to the therapy. The bill now heads to the Senate.
The oil involved in the treatment is extracted from cannabis plants with low amounts of THC, the chemical that gets people high, and high amounts of cannabidiol, or CBD.
The bill applies solely to people with epilepsy who have not responded to at least three other treatments and would strictly regulate the use and growing of plants for research and medical purposes.