(CNN) – Doctors in Macon, Georgia, told Janea Cox that her daughter, Haleigh, might not live another three months.
That was the middle of March, when Haleigh’s brain was being short-circuited by hundreds of seizures a day, overrunning the array of five potent drugs meant to control them. Worse, the drugs were damaging Haleigh’s organs.
“She was maxed out,” Cox said. “She’d quit breathing several times a day, and the doctors blamed it on the seizure medications.”
Cox had heard that a form of medical marijuana might help, but it wasn’t available in central Georgia. So a week after hearing the ominous diagnosis, she and Haleigh packed up and moved to Colorado Springs, Colorado. There, Haleigh began a regimen of cannabis oil: four times a day and once at night.
By summer, she was down to just a handful of seizures a day. In less than three months, doctors were able to wean her off Depakote, a powerful medication that had been damaging her liver.
Haleigh had never been able to walk or talk. But freed from seizures in Colorado, “She said ‘Mama’ for the first time,” Cox said. “She’s playing with puzzles; she’s walking. She’s almost being a normal child.”
Despite all the good news, Cox is living in limbo. Her husband, a paramedic, couldn’t afford to leave his job and pension; he still lives and works in Forsyth, Georgia. The family is relying on charity to keep their Colorado apartment for the next few months; beyond that, the future is uncertain.
A bill being introduced Monday in the U.S. House of Representatives could be Cox’s ticket home. The three-page bill would amend the Controlled Substances Act — the federal law that criminalizes marijuana — to exempt plants with an extremely low percentage of THC, the chemical that makes users high.
If passed, it would be the first time that federal law allows any medical marijuana use.
The bill will land in a Congress that may be open to change. Across the country, highly sympathetic patients and a nonintoxicating product have proved a popular mix. This year alone, 11 states have passed legislation loosening regulation of cannabis strains with high cannabidiol and/or minimal THC content.
In this atmosphere, Perry says that once members and their staffs are brought up to speed, he expects the bill to attract “overwhelming” support.
“It wouldn’t be surprising if we see broad support for this proposal,” agreed Mason Tvert, communications director at the Marijuana Policy Project, which advocates for marijuana and medical marijuana legalization. “If this bill gets support, it will demonstrate that there is recognition of marijuana’s medical benefits.”
Dubbed the Charlotte’s Web Medical Hemp Act of 2014, the bill is named after Charlotte Figi, a young Colorado girl whose parents have campaigned nationwide for easier access to medical marijuana after successfully controlling their daughter’s seizures with cannabis oil. Since her story became known, a growing number of parents have flocked to Colorado, hoping for similar success.
The Charlotte’s Web cannabis strain, developed by the Realm of Caring nonprofit organization in Colorado Springs, is in high demand, in part because of the attention it’s received in the media. Many families wait months for a batch to be grown and processed into cannabis oil. Perry’s bill, however, would apply to any cannabis strain with a THC content of less than 0.3%.
Charlotte’s Web and similar strains not only have minimal THC, they have high levels of cannabidiol, another chemical. A growing body of anecdotal evidence suggests that cannabidiol can effectively control seizures, though there are no published studies to support its use.
It’s easy to find critics who say parents should follow a more traditional route.
“There is no evidence for marijuana as a treatment for seizures,” Rep. John Fleming, R-Louisiana, a physician, claimed during a congressional hearing last month. “We hear anecdotal stories, and that’s how myths come about.”
Fleming and others point out that a pharmaceutical version of cannabidiol oil, called Epidiolex, is being tested in clinical trials. But many children aren’t able to get into the trials. Haleigh Cox is disqualified because she has type-1 diabetes. Others aren’t willing to wait several months to be enrolled.