To get their daughter the treatment she needed, Amy and Wayne Young packed up their homes in Montgomery and Wetumpka, gave away about half their possessions, and moved to Oregon
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“She was in rough shape,” Amy Young said in a telephone interview Thursday. “She couldn’t hold her head up for a minute or so at a time. She spent an awful lot of time in her own world, and she was pretty out of it from the drugs she had to take to stay alive.”
The Youngs were among many families who fought for Carly’s Law, a 2014 measure that appropriated $1 million to a University of Alabama-Birmingham study of the effects of cannabidiol, or CBD, a marijuana derivative most commonly used as an oil. Advocates say the drug shows promise in controlling pain and seizures in those who have no other remedy. CBD contains very little THC, the chemical in marijuana that creates highs.
The Youngs did not qualify to take part in the study, which led them to their move. Last August, they began giving small doses of CBD to Leni three times a day. Within an hour of her first dose, Leni focused on her parents and recognized people from across the room.
“Within a week, she was holding her head up and watching 'Frozen,' ” Young said. “She loved it before, but she would listen to it. Here she was watching it . . . almost immediately, her seizures started to ebb. She has one every four to six weeks. She is almost sitting up independently, and standing with support.”
Amy Young posted a video showing Leni’s progress. It caught the attention of Rep. Mike Ball and Sen. Paul Sanford, both R-Huntsville, who pushed for passage of Carly’s Law and worked with the Youngs on it.
CBD oil is legal in other states, but Carly’s Law limits its use in Alabama to people participating in the UAB study. The legislators have filed a new bill, called Leni's Law, that would allow parents with a valid prescription for CBD oil to own it in the state of Alabama.
Ball said his bill would mean law enforcement would not “go after” someone who legally obtained CBD in another state.
“I want to leave the UAB program intact because that program is providing real evidence that needs to be out there,” he said. “But there are many people I know who could benefit who can’t qualify for UAB program."
Bob Shepard, a spokesman for UAB, said Thursday about 70 people – half adults, half children – are participating in the study. The university expects to release the first results of the study at an American Academy of Neurology conference early next month.
“Anecdotally, the researchers say they are seeing benefits in some patients,” Shepherd said. “Not everybody, but some patients have shown a decrease in seizures. Encouraging is the word you hear.”
Ball also said he hoped to pass a joint resolution from the Alabama Legislature urging Congress to move marijuana from a Schedule I drug to a Schedule II drug. Schedule I drugs are substances considered to be highly addictive with "no currently accepted medical use."
The move would not legalize marijuana, but make research into the drug more workable. Cocaine, Ball noted, is on Schedule II. "If there’s medicinal value to marijuana in whatever form, it shouldn’t be on Schedule I," he said.
Getting Carly’s Law passed, Ball said, was difficult due to concerns that the law was an attempt to legalize marijuana. He did not expect difficulties with the current legislation.
“People have been educated about this,” he said. “Folks have been educated about this. They know this is about helping sick people. They know it’s not about smoking pot.”
Young said she did not expect to move back to Alabama, in part because Oregon’s climate seems better for her daughter. But, she added, they still have family in the state, including a daughter who should graduate from Auburn in December, and they want to see them.
And she wants to see other people gain access to CBD.
“This doesn’t just affect kids with seizures,” she said. “This affects people who need palliative care. It could mean relief for so many people who are suffering.”
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