By Nicole Weisensee Egan
Updated March 17, 2014 12:00 PM
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Two years ago Paige Figi could do no more than comfort her 5-year-old daughter Charlotte as the blue-eyed girl convulsed with up to 60 seizures a day. “She was like a 1-month-old,” says Figi. “She could not talk or walk or eat. She couldn’t swallow.” None of the dozen or so medications they’d tried had helped Charlotte, who has Dravet syndrome, a rare and sometimes deadly form of epilepsy. For Figi it got so bad, “I was begging for her to pass away in her sleep one night,” she says, “because it was so much suffering.”

Today Charlotte is a different girl. Figi, 40, an at-home mom of three in Monument, Colo., believes she has been helped by an alternative treatment that has prompted more than 100 families to pick up and move to the Centennial State: medicinal pot. Developed by Joel Stanley, 34, of Colorado Springs, and his four brothers, the elixir—named Charlotte’s Web after Charlotte Figi, its first patient—is an oil extract (see box, p. 170) that has been given to about 200 children so far, says Heather Jackson, a parent and executive director of the brothers’ foundation. Dr. Margaret Gedde of Colorado Springs, who has seen 170 of those children, says 75 percent have had a decline in seizures. “They’re coming from New York, New Jersey, Maine, North Dakota, Washington state,” Gedde says. That’s created a community of “marijuana refugee” families who gather over barbecues and bonfires to share information and offer mutual support. Cristi and Francis Bundukamara moved from Dade County, Fla., in November to get Charlotte’s Web for their son Reggie, 14, and daughter Miah, 13; both have a rare genetic disorder inherited from their dad. Reggie, whose condition is more severe, has experienced a 70 percent reduction in seizures, his mom says. “Here you have this network of parents who have it just as bad as you,” Cristi says. “If you have a setback, you don’t get discouraged. Here there’s hope.”

There isn’t yet clear scientific proof that the treatment is safe and effective over time. Phil Gattone, president of the Epilepsy Foundation, is intrigued by the stories he is hearing from families helped by Charlotte’s Web—but also cautious. “We have to get more clinical trials,” he warns. “We don’t want to be talking five years from now that everyone pulled the trigger too soon.” Those concerns seemed far from the minds of parents gathered on a recent Sunday afternoon at the mountain home of Paige and Matt Figi. Downstairs seven children were playing unsupervised, something that was impossible before their seizures were under control, parents say. Annie Galloway smiles as her 10-year-old daughter Maitri skips into the room, twirling her long blonde curls, looking people in the eye and laughing—none of which she did when suffering 40 seizures a day, says her mom. “I’m so happy,” says Galloway, 43, a teacher who took a leave and is getting financial help from her parents and ex-husband after moving from Vermont. “It’s amazing.”

That’s why Paige Figi is now a crusader, traveling the country sharing her story to persuade more states to legalize medical marijuana. These days, while Charlotte has some developmental delays, “we ride horses, we go hiking, we have friends,” she says. “We’re just like a normal family.”