The doctors were out of ideas to help 5-year-old Charlotte Figi.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 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.
Still, more than 100 families have relocated 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 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.
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.
Few dispensaries stock CBD-heavy weed that doesn't get you high. Then Paige Figi found Joel Stanley.
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."
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
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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