- Charlotte Figi has Dravet syndrome - a rare and severe form of epilepsy
- She suffered from thousands of seizures every week and couldn't walk
- In desperation, her parents tried treating her with medical marijuana
- After just a few months she started walking and talking for the first time
- Her seizures have also almost completely stopped
A child who suffered from thousands of
seizures a week is finally on the road to recovery - after her parents
treated her with cannabis.
Suffering from a rare genetic disorder,
Charlotte Figi, 5, 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.
Scroll down for video
Matt Figi hugs and tickles his once severely-ill 7-year-old daughter
Charlotte, as they wander around inside a greenhouse for a special
strain of medical marijuana known as Charlotte's Web, which was named
after the girl early in her treatment, in a remote spot in the mountains
west of Colorado Springs, Colorado
A special strain of medical marijuana known as
Charlotte's Web grows inside a greenhouse, in a remote spot in the
mountains west of Colorado Springs
Charlotte's Web is a strain of marijuana in
which the psychoactive THC has largely been bred out, and the other
cannabinoid compounds thought to be medically useful accentuated
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 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.'
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.
Workers cultivate small clones of a special strain of medical marijuana known as Charlotte's Web
There is increasing evidence that the pot strain
is helping some children with epilepsy has led more than 100 families
to relocate to Colorado for treatment since last summer, when success
stories about Charlotte's Web began circulating via social media.
WHAT IS DRAVET SYNDROME?
Dravet syndrome is a rare and catastrophic form of epilepsy that begins in infancy.
Children with Dravets tend to have normal development as babies but development starts to plateau when they are in their second year of life.
Individuals with Dravet syndrome face a higher incidence of sudden unexplained death in epilepsy patients (SUDEP).
They often also experience other conditions including developmental delays, sleeping difficulties, chronic infections and difficulty feeding.
There is currently no cure and treatment options are limited - they mainly involve using anti-epilepsy drugs to treat the seizures.
Little is known about the long term prognosis of people with Dravet syndrome.
Children with Dravets tend to have normal development as babies but development starts to plateau when they are in their second year of life.
Individuals with Dravet syndrome face a higher incidence of sudden unexplained death in epilepsy patients (SUDEP).
They often also experience other conditions including developmental delays, sleeping difficulties, chronic infections and difficulty feeding.
There is currently no cure and treatment options are limited - they mainly involve using anti-epilepsy drugs to treat the seizures.
Little is known about the long term prognosis of people with Dravet syndrome.
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 — 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.
Elizabeth Burger, 4, suffers from severe
epilepsy and is receiving experimental treatment with a special strain
of medical marijuana, which she takes orally as drops of oil
Aileen Burger holds up a bottle of
cannabis-infused oil used as medicine for her 4-year-old daughter
Elizabeth, who suffers from severe epilepsy and is receiving the
experimental treatment with a special strain of medical marijuana
Aileen Burger loads an oral syringe with
cannabis-infused oil used as medicine for her 4-year-old daughter
Elizabeth, who suffers from severe epilepsy and is receiving the
experimental treatment with a special strain of medical marijuana
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.
In early 2012, it seemed Charlotte would be added to that grim roster. Her vital signs flat-lined three times, leading her parents to begin preparing for her death. They even signed an order for doctors not to take heroic measures to save her life again should she go into cardiac arrest.
Her father, Matt, a former Green Beret who took a job as a contractor working in Afghanistan, started looking online for ways to help his daughter and thought they should give pot a try. But there was a danger: Marijuana's psychoactive ingredient, THC, can trigger seizures.
The drug also contains another chemical known as CBD that may have seizure-fighting properties. In October, the Food and Drug Administration approved testing a British pharmaceutical firm's marijuana-derived drug that is CBD-based and has all its THC removed.
Elizabeth Burger, 4, suffers from severe
epilepsy and is receiving experimental treatment with a special strain
of medical marijuana, which she takes orally as drops of oil
One of 11 siblings raised by a single mother and their grandmother in Oklahoma, 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 tumors.
Stanley went to the Figis' house with reservations about giving pot to a child.
'But she had done her homework,' Stanley said of Paige Figi. 'She wasn't a pot activist or a hippy, just a conservative mom."
Now, Stanley and his brothers provide the marijuana to nearly 300 patients and have a waitlist of 2,000.
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."
Increasing anecdotal evidence that the pot
strain is helping some children with epilepsy has led some families
desperate to help their children to relocate to Colorado for treatment
Donald Burger recently urged a New York state legislative panel to legalize 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 Burger 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, Calif., 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.
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.
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