January 12, 2014 Updated: January 13, 2014 at 8:00 am
Before sunrise on a recent morning, Paige Figi tossed on a scarf, grabbed her suitcase, and gave her daughter Charlotte, who had never been healthy enough to leave with anyone else, a hug goodbye.
"Be good, sweetie," she said. "I love you."
Charlotte has a severe form of epilepsy. Two years ago Figi started giving the then-5-year-old a daily dose of oil made from a special marijuana strain produced in Colorado. The oil has almost no THC, the molecule that gets users stoned, but is rich in a molecule called cannabidiol that studies suggest could control seizures. Before the oil Charlotte had hundreds of seizures per week. She now has, on average, fewer than one. Once nearly catatonic, today she sings, dances, takes selfies.
News of Charlotte's improvement turned Figi into an unwitting poster mom for medical marijuana.
In the past few months she has flown to Vermont, California, Pennsylvania, Oklahoma, Florida and Washington D.C. to tell her story. She usually travels with members of the Stanley family - five brothers from Colorado Springs who make the oil.
Their goal is to get the oil to as many families as possible, while also establishing a sustainable business that can provide those in need with a safe, reliable product. Together they are setting up partnerships to produce the oil in states where it is legal, and pushing to change laws in states where it is not.
This time Figi was on her way to New York, which is considering a medical marijuana bill this spring.
"I always stayed away from politics. I don't feel like I'm an activist. I just feel other kids should have this chance," Figi said as she drove to pick up Joel Stanley before heading to the airport. "There is no one to do it but me."
The Stanleys and Figi are accidental partners. The brothers ran a typical medical marijuana dispensary in Colorado Springs in February 2012, when Figi came in, asking for an odd plant they had bred that was so low in THC that they had named it Hippie's Disappointment. A handful of small studies suggested marijuana high in cannabidiol could help quell seizures. Other growers had told Figi that the Stanleys had such a plant. Seeing that the girl had not been helped by a dozen prescription drugs, the brothers began blending Hippie's Disappointment with oil, so Charlotte could take it. When they saw the healing effect the strain had, they renamed it Charlotte's Web.
A special report on Charlotte and other local kids helped by the oil aired on CNN in August. The Stanleys began getting about 4,000 calls per month. Almost 100 families have moved to Colorado since then to get the oil. Another 171 are on a waiting list and could move in the next several months. But not everyone can just pick up and leave home, Figi said.
During the last few months, she has watched two children in other states with the same disorder as her daughter - Dravet Syndrome - die without ever being able to try the oil.
"That is what motivates me," she said. "I will not stop fighting."
Already Figi and the Stanleys have had success. The Stanleys have set up a dispensary in Modesto, Calif., where medical marijuana is legal. There, Ray Mirzabegian, the father of a 10-year-old girl with Dravet Syndrome, now produces Charlotte's Web oil to the Stanleys' exacting standards.
"The plants are in the ground and we are expanding as fast as we can," he said. "We think eventually we may have 20,000 patients."
The California dispensary is set up like a franchise. Mirzabegian owns the business, and pays a small licensing fee to the Stanleys to use their plant and their process. "The intentions of the Stanleys is not to make lots of money," he said. "It is just to be sustainable and safe."
Federal law prohibits mailing the oil, even to other states where medical marijuana is legal.
The brothers are setting up more licensees in six other states and Canada that should open in the next several months.
"We realized when we saw what a huge impact this had on these kids' lives that we would have to try to take it to other states," Joel Stanley said as he came down his driveway and put his suitcase in Figi's car.
Other states have strains of marijuana with similar levels of THC and cannabidiol, but parents have to buy the raw plant, make the oil themselves, and hope it contains what the seller says it does. There are no growers in other legal states, Stanley said, that test the levels of compounds in each batch to ensure every drop has the same amount of active ingredients.
"These kids are delicate, and they rely on this. It has to be done right," Stanley said. "We feel we have a moral obligation to put this in the hands of the people who need it."
They also are having success on the legal front, thanks to a network of parents ready to lobby for a law that will help their epileptic kids. In state after state, parents have been able to persuade legislators to introduce bills. The Stanleys then provide advice on how to craft legal language tailored to allow for the oil, but not necessarily medical marijuana as a whole.
Figi has been flown in by these groups to testify at hearings and tell Charlotte's story.
"We started Charlotte on a therapy, and she instantly went seven days seizure-free from the first dose," Figi said at a hearing in Rochester, New York in December . "Now we're two years into this treatment, and she remains over 99.9 percent seizure-free."
Figi said she is careful not to get involved in larger controversies over marijuana.
"I don't even say marijuana," she said. "What we are talking about is so different."
This spring, eight states plan to introduce legislation legalizing the oil. Twenty others already have medical marijuana laws.
Even in typically conservative states like Utah and Oklahoma where a broad medical marijuana bill likely would not pass, some lawmakers are optimistic.
"Utah wouldn't stand one chance in a hundred of approving medical marijuana," said Gage Froerer , a Republican state legislator who is sponsoring a bill there. "But these groups of mothers came to me. We spoke with the Stanleys and felt pretty comfortable these guys were legitimate, so we decided to move forward. So far the other lawmakers I've spoken to have been very open to it."
The bill he plans to introduce this month is crafted to allow only marijuana oil with almost no THC, he said. "This is not about the elephant's nose in the tent," to allow Colorado-style medical marijuana, he said.
Alabama, which has some of the most restrictive marijuana laws in the country, also has a bill in the works. State Sen. Paul Sanford , one of its sponsors, told The Huntsville Times it was a hot-button issue, but was clearly the right thing to do, adding "If it costs me an election, I'll be OK. I'll sleep well at night."
Figi and the Stanleys have also met with some members of Congress, but there is no federal legislation in the works that would ease restrictions on mailing the oil, or change federal marijuana laws.
The constant travel has its costs. As he put his suitcase in the car, a weary-looking Stanley said he had spent only six days out of the past 30 at home, and one of his four children was crying the night before when she heard he had to leave again.
He feels he has little choice but to go. He and his brothers almost accidentally created an oil that could improve the lives of untold thousands of people. Stanley, who graduated from Colorado Springs Christian School in 1998 , said the collision of events was "almost divine."
"For whatever reason, it is up to us to do this. This could make history. And it is now or never," he said.
Waiting by the car, Figi nodded. They had a long day ahead that included a flight and testifying at a hearing in Long Island. The sun had just risen and it caught the steam rising from her travel mug. She raised it and said, "Here's to New York."