Cannabis Cure: The Charlotte Figi Saga

CNN recently “broke” a story that actually hit the scene back in June. The story is that of young Charlotte Figi, a 6-year old from Colorado who suffers from Dravet syndrome, a rare disorder that manifests with very long grand mal seizures (30 minutes to several hours in length). It presents in infancy and progressively worsens over time.

The journey that Charlotte took through conventional medicine is storied and documented well in CNN’s piece. The short version is that the Figis (Paige and Matt) sought out every means of traditional medicine available with limited success. The only things that sort of worked to tame Charlotte’s seizures were heavy-hitting pharmaceuticals (such as barbiturates and benzodiazepines) and a special high-fat diet. The side effects of those narcotics and diet were severe. Charlotte’s behavior became problematic, she suffered bone-density loss, her immune system took a major dive, and, at one point, she even resorted to eating pine cones. Worse still, is that after some initial success with seizure management, eventually they returned with increased severity.

Charlotte’s parents were at the end of their rope. Her father, Matt Figi (a former Green Beret who retired from the military because he was constantly being recalled to be with his daughter in the hospital), began to research and found a video online of a California child with Dravet’s who was seeing success with cannabis treatment.

Necessity makes strange bedfellows. The Figis had been long time “no” voters in the legalization debate. With the recent legalization in Colorado and as parents who would move heaven and earth to take the pain from Charlotte, they could no longer afford a hard line stance against cannabis.

One of the most challenging parts of this ordeal was finding two doctors to sign off on giving a child medical authorization. After much struggle, the Figis found their docs:

“”Everyone said no, no, no, no, no, and I kept calling and calling,” Paige said. She finally reached Dr. Margaret Gedde, who agreed to meet with the family. ‘(Charlotte’s) been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication,’ Gedde said. ‘When you put the potential risks of the cannabis in context like that, it’s a very easy decision.’ The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn’t familiar with Dravet, and because of Charlotte’s age, had serious reservations. “They had exhausted all of her treatment options,” Shackelford said. “There really weren’t any steps they could take beyond what they had done. Everything had been tried — except cannabis.’”

Authorization gave way to another hurdle: administration. The Figis were not keen on having Charlotte smoke cannabis. Paige discovered which strain should be beneficial, bought 2 ounces for about $800, and asked a friend to process the cannabis into an oil that could be added to Charlotte’s food. The strain was bred to be very low on THC and very high in CBD (basically, the cannabidinol levels are increased while the psychoactive properties are diminished).

What followed was nothing short of a miracle to the Figis. Charlotte’s seizures were almost immediately under control. As Paige remembers, “When she didn’t have those three, four seizures that first hour, that was the first sign. And I thought well, ‘Let’s go another hour, this has got to be a fluke.'”

It was no fluke, the seizures stopped for seven full days. The Figis had finally stumbled on a solution, now the problem was supply. They found a group of growers known as the Stanley Brothers, who had a ton of high CBD/low THC weed that wasn’t selling. Long story short, the Stanley Bros. were able to help supply what Charlotte needed and have actually bred a strain just for her (named Charlotte’s Web) and started the Realm of Caring Foundation, that provides next-to-free cannabis for those in need.

Today, at 6 years old, Charlotte is thriving for the first time. As CNN reports it, “her seizures only happen two to three times per month, almost solely in her sleep. Not only is she walking, she can ride her bicycle. She feeds herself and is talking more and more each day.”

Her father, Matt, reflected on this experience, “I literally see Charlotte’s brain making connections that haven’t been made in years. My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn’t know about this? How come they didn’t make me aware of this? I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option.”

Well, with publicly respected CNN doc Sanjay Gupta recently voicing his assent, maybe we can get beyond the days of ill-informed doctors spreading outdated, incomplete information without a second thought.