THE doctors were out of ideas to help 5-year-old Charlotte Figi. As a last resort her mother called medical marijuana shops to ease the 300 seizures her daughter was having every week.
Suffering from a rare genetic disorder, she had as many as 300 grand mal seizures a week, used a wheelchair, went into repeated cardiac arrest and could barely speak. 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 has inspired both a name for the strain of marijuana she takes that is bred not to make users high — Charlotte’s Web — and an influx of families with seizure-stricken children to Colorado from states that ban the drug.
“She can walk, talk; she ate chilli 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.’’
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-authorised 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.
A worker cultivates a special strain of medical marijuana known as Charlotte’s Web inside a greenhouse, in a remote spot in the mountains west of Colorado Springs, Colorado.
Still, more than 100 families have relocated since Charlotte’s story first began spreading last summer, according to Mrs Figi and her husband and the five brothers who grow the drug and sell it at cost through a non-profit. The relocated families have formed a close-knit group in Colorado Springs, the law-and-order 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.
Few dispensaries stock CBD-heavy weed that has the THC removed because the THC is what gets you high. CBD, or cannabidiol, lacks the psychoactive effects of smoking pot but retains many of the medicinal benefits, including its anti-seizure and anti-inflammatory effects.
Luckily enough, Paige Figi found Joel Stanley.
One of 11 siblings raised by a single mother and their grandmother in Oklahoma, Mr Stanley and four of his brothers had found themselves in the medical marijuana business after moving to Colorado. Almost as an experiment, they bred a low-THC, high-CBD plant after hearing it could fight tumours.
Aileen Burger sits on her couch near her four-year-old daughter Elizabeth, left, who suffers from severe epilepsy and is receiving experimental treatment with a special strain of medical marijuana, which she takes orally as drops of oil, at home in Colorado Springs, Colorado.
Mr Stanley went to the Figis’ house with reservations about giving pot to a child.
“But she had done her homework,’’ Mr Stanley said of Paige Figi. “She wasn’t a pot activist or a hippy, just a conservative mim.’’
Now, Mr Stanley and his brothers provide the marijuana to nearly 300 patients and have a waitlist of 2000.
The CBD is extracted by a chemist who once worked for drug giant Pfizer, mixed with olive oil so it can be ingested through the mouth or the feeding tube that many sufferers from childhood epilepsy use, then sent to a third-party lab to test its purity.
Charlotte takes the medication twice a day. “A year ago, she could only say one word,’’ her father said. “Now she says complete sentences.’’
The recovery of Charlotte and other kids has inspired the Figis and others to travel the country, pushing for medical marijuana laws or statutes that would allow high-CBD, low-THC pot strains.
Donald Burger recently urged a New York State legislative panel to legalise medical marijuana while his wife, Aileen, was in the family’s new rental house in Colorado Springs, giving Charlotte’s Web to their daughter Elizabeth, 4. The family only relocated to Colorado after neurologists told them Elizabeth’s best hope — brain surgery — could only stop some of her seizures.
“It’s a very big strain being away from the rest of our family,’’ Aileen Burge said recently while waiting for her husband to return from a trip to sell their Long Island house. “But she doesn’t have to have pieces of her brain removed.’’
Ray Mirazabegian, an optician in Glendale, California, brought Charlotte’s Web to his state, where medical marijuana is legal. He convinced the Stanley brothers to give him some seeds he could use to treat his 9-year-old daughter Emily, who spent her days slumped on the couch. Now, she’s running, jumping and talking. Mirazabegian is cloning the Charlotte’s Web seeds and has opened the California branch of the Stanleys’ foundation.
Mr Mirazabegian has begun to distribute the strain to 25 families and has a waitlist of 400. It includes, he said, families willing to move from Japan and the Philippines.