14/08/2014 12:58 BST | Updated 20/05/2015 06:12 BST

Why We Give Our Five-Year-Old Daughter Marijuana


A desperate mum bought medical marijuana for her five-year-old daughter because doctors were at a loss about how to treat her rare and severe form of epilepsy.

Charlotte Figi had her first seizure when she was just three months old. She was diagnosed with a rare genetic condition called Dravet syndrome, which often kills children before they reach adulthood.

Despite constant medical attention Charlotte's condition worsened. By the age of three, she was suffering from as many as 300 seizures a week. She used a wheelchair and could barely speak and three times her seizures were so severe her parents thought she would die.

In desperation, Charlotte's mother, Paige Figi, began calling medical marijuana shops after she saw a video online of a boy whose Dravet syndrome was being successfully treated with cannabis.


Two years later, Charlotte is largely seizure-free and able to walk, talk and feed herself after taking oil infused with marijuana.


Her recovery has inspired a name for the strain of marijuana she takes - Charlotte's Web - and an influx of families with seizure-stricken children to Colorado from states that ban the drug.

"She can walk and talk," Paige 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.

But doctors warn there is no proof that Charlotte's Web is effective, or even safe.

"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.

But, according to Charlotte's parents and the five brothers who grow and sell the drug at cost through a non-profit organisation, since Charlotte's story first began spreading last summer, more than 100 families have relocated to Colorado, where it is legal to use cannabis to treat certain medical conditions - including seizures.

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 nine-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 centres 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.

Charlotte is a twin, but her sister, Chase, doesn't have Dravet syndrome. When Charlotte's condition deteriorated in early 2012 her father, Matt 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 tumours.

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 mum."

Now, Stanley and his brothers provide their marijuana to nearly 300 patients and have a waiting list 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."

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