Who is Charlotte Figi?
Charlotte Figi was 5-years-old when her parents signed a form ordering doctors not to take heroic measures to save her life. It was early 2012, her parents had began to prepare for her death.
Charlotte has a rare genetic disorder known as Dravet’s syndrome. Children with Dravet’s generally do not reach adulthood. Charlotte would have as many as 300 grand mal seizures a week. She was bound to a wheelchair and could barely speak. Charlotte’s twin sister does not have this disorder.
After going into cardiac arrest and flat lining 3 times, her parents were desperate to save their baby. As a last resort they began calling medical marijuana shops and doing heavy research. They were willing to give anything a try, including pot. The immediate danger, marijuana’s psychoactive ingredient, THC, can trigger seizures. Yet the drug also contains CBD, which may have seizure-fighting properties, and that’s what they were banking on!
What is the drug known as “Charlotte’s Web?”
Charlotte began taking oil infused with a special pot strain that would not make her high. Today, this strain of marijuana is known as “Charlotte’s Web.”
Two years after Charlotte began using “Charlotte’s Web” she is largely seizure-free and able to walk, talk and feed herself. She has become an inspiration to parents of children with seizures around the country. Hundreds of families have migrated to Colorado Springs, where the dispensary selling the drug is located.
“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.
If it works, why not make this miracle drug more readily available?
Doctors warn there is no proof that Charlotte’s Web is effective, or even safe. Parents must use extreme caution and protect themselves against bogus claims by non-authorized suppliers. 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.
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.
Who is the provider? How do parents know if what they are getting is “pure”?
Stanley is one of four brothers in the medical marijuana business. Charlotte’s Web began as experimental. They bred a low-THC, high-DBD plant after hearing it could fight tumors. Their efforts to ensure purity have won them praise.
The first time Stanley went to the Figi’s house he was skeptical of giving pot to the 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 wait-list of 2,000.
Medical Marijuana is legal in California. Can “Charlotte’s Web” be found there?
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.
The Associated Press contributed to this story
Special Strain of Cannabis Brings Hope to Families