ATLANTA — Haleigh Cox's seizure disorder makes all her days hard. She has up to 100 seizures a day. When her breathing stopped earlier this month, her mom, Janea Cox, thought she had lost her only child.
Since then, the Forsyth 4-year-old has been struggling at Children's Hospital at Egleston in Atlanta, tied into tubes that keep her alive.
Her family has tried dozens of medications and treatments, and now it is desperately seeking another one.
That medicine is a capsule containing extracts from marijuana, a drug that's illegal in all forms in Georgia.
"I'm in contact with several families in Colorado at the moment with this same diagnosis as Haleigh," Cox said. Some of them have gone down from as many as 300 seizures daily to as few as one a week or month, she said. Mother and daughter were packing their bags for Colorado recently when the latest crisis hit.
"She's on four seizure medications now," Cox said. "A seizure medication literally shuts down your brain."
Haleigh's parents miss typical playing with their child, listening to her laugh and watching her mind develop. Instead, their daughter sleeps about 18 hours a day, one of many side effects of the anti-seizure drugs she takes. She needs help to sit up or hold up her head.
While federal law bans marijuana, 20 states plus the District of Columbia now allow the use of medical marijuana.
After meeting the Coxes, state Rep. Allen Peake, R-Macon, said he's going to take the lead on adding Georgia to that list.
"I'm an unlikely champion of this," said Peake, who said he's never smoked pot and said several times that he opposes anything except a tightly controlled, legitimate medical marijuana trade.
"But this has affected me more than anything else in eight years here" at the state Capitol, he said. "If it was my child, my grandchild, I'd be crawling over broken glass to make sure this legislation gets passed."
Now, there's no legislation in Georgia, only talk -- including a lot of conversation that Peake initiates with his colleagues.
No one state regulates medical marijuana just like another, said Kris Hermes, of Americans for Safe Access, a Washington, D.C.-based lobby group that advocates for legal access to cannabis for therapeutic uses and for research.
By his count, at least six more states will look at medical marijuana legislation this year.
But there's a trend in some places, he said, of passing laws that are not implemented or that are so strict, prospective patients do not have ready access to cannabis.
In Illinois, for example, a law setting up a pilot medical marijuana program took effect this month, but the rules and regulations will not be ready until late summer at the earliest. Until then, not even the seeds can be planted.
"We're kind of sending the message that it's good to strictly regulate," Hermes said, "but you have to keep in mind the needs of patients."
Cox does not support recreational marijuana or even the type of weed that smokers know.
What she wants Haleigh to try is a compound derived from "a special kind of marijuana that's high in CBD (cannabidiol) that helps the brain, and low in THC," or tetrahydrocannabinol, which delivers the plant's high.
Georgia lawmakers have thought about therapeutic cannabis before. In 1980, the Legislature created the Controlled Substances Therapeutic Research Program. It set up a process for doctors to investigate the effects of cannabis on glaucoma and cancer patients.
But at least within living memory, that program has never attracted any researchers or volunteer patients.
The Medical Association of Georgia supports that framework. But "MAG strongly condemns the use of marijuana and any of its cannabinoid derivatives such as delta9-tetrahydrocannabinol (THC) for general (recreational) use or for any purpose other than medical research," said the association's executive director, Donald Palmisano Jr. in a written statement.
"We've been struggling for years trying to get the Legislature to study this issue," said James Bell, executive director of Georgia CARE, the Campaign for Access, Reform and Education. It advocates reform of Georgia's "antiquated" cannabis laws.
The conversation this year is a bit of a surprise to Bell. It cranked up earlier this month when a Columbus state senator called for hearings on medical marijuana.
"Once someone says something, it seems like it's OK to say it," Bell said. "It's been such a taboo issue."
Georgia CARE is ready to send doctors, patients and other professionals whenever the Legislature wants to call hearings, either formal or informal, he said.
"I think we've got dozens more (lawmakers) who are wanting to educate themselves more," Bell said.
Peake said he's starting to read medical reports and study ways to potentially control access, quality, distribution and regulation of medical marijuana.
"The easy answer right now is, 'Let's study for a year, let's form a committee,' " said Peake, but he added, "Some of these kids don't have a year."
Bell said he wishes legislation had already been passed, adding Georgia-grown marijuana could be ready 100 days after growers get a go-ahead.
Friday was the fifth day of the 2014 legislative session, which runs 40 days. Passing a medical marijuana law would be a huge task in the remaining time.
"That'll be a monumental leap for this Legislature to do something this session," Peake said.
"If it does, it'll be a small miracle."