A bill allowing the use of cannabis oil for treatment of certain medical conditions is one step from becoming Kentucky law.
The oil, extracted from marijuana and hemp plants, is giving a Hopkinsville family hope for their infant daughter.
Six-month-old Clara Gilliam was born a healthy, nine-pound, nine-ounce baby girl. But at three months, her behavior started to baffle her parents, Jerry and Julie Gilliam."She started to have what appeared to just be constipation or stomach aches, but her eyes were deviating to the sides, and as a mom, you just know when something's not normal," explained Gilliam.
There was something more to the strange postures and facial movements. Baby Clara was diagnosed with Aicardi Syndrome, a rare disease affecting only 800 people in the U.S., and all of them females. It turned out that Clara was having seizures.
Julie Gilliam sat in her Hopkinsville home last week, rocking Clara and giving her a bottle. Her contentment was cut short.
"She's starting to have a seizure right now. It looks like it will be a mild cluster," Gilliam remarked. Sometimes in between the spasms she's crying and all you can do is hold her and comfort her, but it doesn't get any easier as a parent."
Father Jerry Gilliam says doctors have warned that the multitude of seizures isn’t good on young Clara’s body.
"We don't know what her development holds until we stop the seizures, and we know if we don't stop the seizures, there is no hope for development," replied Gilliam.
The treatment options are few and risky.
"One of the first seizure medications that they try, there's a 50% chance of impaired vision," Gilliam explained. "It was hard for me to accept that we would possibly take away vision to help control seizures, so it was a no-win."
Through some research, Julie Gilliam learned the state of Oregon accepted out-of-state patients for treatments involving medical marijuana. So, the family headed west.
Doctors there extracted cannabis oil from a marijuana plant with only a trace amount of the psychoactive ingredient THC. The oil was administered by drops under Clara’s tongue.
Over the course of a week, her rate of seizures dropped by 80%.
"There's no psychoactive effects, and then you compare it to the side effects of some of these other drugs she's on that just makes her a zombie, it's pretty easy to rationalize," commented Gilliam.
The Gilliam's returned from Oregon on a mission to change Kentucky law. The family shared their plight with members of the General Assembly. Their story struck a familiar cord with State Senator Julie Denton.
"My daughter whose now 16 suffered from epilepsy as a child, but fortunately she grew out of it," explained Denton.
Denton sponsored cannabis oil legislation in the Senate where it passed unanimously, even with support from law enforcement. Under Denton’s measure, patients could be treated with the oil at the research hospitals at the University of Kentucky and University of Louisville.
Kentucky is poised to become the 21st state in the nation to pass a law allowing some form of medical marijuana treatment, but Senator Denton doesn't see cannabis oil as medical marijuana since it can also be extracted from hemp plants, which Kentucky is on the verge of legally growing for the first time in decades.
Regardless, for Julie Gilliam, the mother of six-month-old Clara, lawmakers kept her family from possibly becoming medical refugees.
"We didn't want to move or leave the state because we're a blended family," replied Gilliam. "I just had faith our legislators would do the right thing."
The measure cleared its last legislative hurdle Wednesday, passing unanimously out of the House. Governor Steve Beshear is expected to sign the bill into law. The measure has an emergency clause, meaning it would take effect immediately.