COLORADO SPRINGS, Colo. -- Parents are flocking to Colorado with their sick children to find “Charlotte’s Web,” a strain of marijuana thought to treat debilitating seizure disorders.
The strain was named for 5-year-old Charlotte Figi, who had been suffering from a rare disorder called Dravet’s syndrome, which caused her to have as many as 300 grand mal seizures a week.
Charlotte used a wheelchair, went into repeated cardiac arrest and could barely speak, but doctors were out of ideas for help. Then as a last resort, her mother began calling medical marijuana shops.
Two years later, Charlotte is largely seizure-free and able to walk, talk and feed herself after taking oil infused with a special pot strain. Her recovery inspired the Charlotte's Web name for the marijuana strain she takes in oil form that is bred not to have THC -- the ingredient that make users high.Her story also spread on social media, and inspired an influx of families with seizure-stricken children to Colorado from states that ban the drug.
"She can walk, talk; she ate chili in the car," her mother, Paige Figi, said as her dark-haired daughter strolled through a cavernous greenhouse full of marijuana plants that will later be broken down into their anti-seizure components and mixed with olive oil so patients can consume them. "So I'll fight for whoever wants this."
The family of 20-month-old Maggie Selmeski moved from Tennessee to Colorado last November seeking Charlotte’s Web. Her mom, Rachel, told CBS News' Teri Okita that her daughter would suffer up to 500 seizures a day, and epilepsy medication did not help. However, Charlotte’s Web has reduced the seizures drastically, she said.
“I can watch people's face as I tell them we're giving her cannabis oil, and it's like ... a little questioning,” she said.
Doctors warn there is no proof that Charlotte's Web is effective, or even safe.
In the frenzy to find the drug, there have been reports of non-authorized suppliers offering bogus strains of Charlotte's Web. In one case, a doctor said, parents were told they could replicate the strain by cooking marijuana in butter. Their child went into heavy seizures.
"We don't have any peer-reviewed, published literature to support it," Dr. Larry Wolk, the state health department's chief medical officer, said of Charlotte's Web.Scientist Dr. Margaret Haney, director of the Marijuana Research Laboratory at Columbia University in New York -- one of a handful of U.S. labs that perform government-funded studies on marijuana -- told CBS News that she is “uncomfortable” with the absence of evidence that Charlotte’s Web treats seizures, despite parents clinging to the hope it does.
"I have heard of this and have deep empathy for the desperation of parents with ill children," Haney said. "Cannabis is not the world’s most dangerous drug by any stretch but that does not mean it is without potential long-term cognitive and psychiatric consequence, especially when it comes to exposure to children.”
She added, "The best thing we can do for these patients and their parents is prove this potential medication works."
The lack of scientific evidence hasn’t stopped more than 100 families from relocating to Colorado since Charlotte's story first began spreading last summer, according to Figi and her husband and the five brothers who grow the drug and sell it at cost through a nonprofit. The relocated families have formed a close-knit group in Colorado Springs, the town where the dispensary selling the drug is located. They meet for lunch, support sessions and hikes.
"It's the most hope lots of us have ever had," said Holli Brown, whose 9-year-old daughter, Sydni, began speaking in sentences and laughing since moving to Colorado from Kansas City and taking the marijuana strain.
Amy Brooks-Kayal, vice president of the American Epilepsy Society, warned that a few miraculous stories may not mean anything -- epileptic seizures come and go for no apparent reason -- and scientists do not know what sort of damage Charlotte's Web could be doing to young brains.
"Until we have that information, as physicians, we can't follow our first creed, which is do no harm," she said, suggesting that parents relocate so their children can get treated at one of the nation's 28 top-tier pediatric epilepsy centers rather than move to Colorado.
However, the society urges more study of pot's possibilities. The families using Charlotte's Web, as well as the brothers who grow it, say they want the drug rigorously tested, and their efforts to ensure its purity have won them praise from skeptics like Wolk.
For many, Charlotte's story was something they couldn't ignore.Charlotte is a twin, but her sister, Chase, doesn't have Dravet's syndrome, which kills kids before they reach adulthood.