Figi’s death was confirmed in a message posted on her mother Paige’s Facebook page by a friend on behalf of the family. It read: “Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love. Please respect their privacy at this time.”
Realm of Caring, an organization that Figi co-founded, also shared a statement on Facebook, saying: “Some journeys are long and bland and others are short and poignant and meant to revolutionize the world. Such was the path chosen by this little girl with a catastrophic form of epilepsy called Dravet Syndrome. Charlotte’s mom, Paige, helped pave the path for thousands of sick children with little hope for a future. A life that created a revolutionary movement in legitimizing cannabis as a therapeutic option.”
A cause of death has not yet been confirmed, although there have been reports that Charlotte died of complications related to COVID-19. Per The Colorado Sun, Paige Figi had been saying on Facebook recently that her family had been hit by a serious illness, although she did not specify that it was the coronavirus. Multiple news outlets also sourced the COVID-19 information to the aforementioned Realm of Caring Facebook post, although that wording has since been removed from the post. Realm of Caring did not immediately respond to Rolling Stone‘s request for comment.
Charlotte Figi had her first seizure when she was three months old and at 2-and-a-half years she was diagnosed with Dravet Syndrome, a rare form of epilepsy. Over the next several years, her parents tried an array of different treatments, but Charlotte’s condition worsened and her seizures grew more frequent. Then, per CNN, her father found a video online about a California boy who’d been successfully treating Dravet with a cannabis strain that was low in THC — the psychoactive component of marijuana — and high in cannabidiol, the more medicinal component, better known as CBD.
Having exhausted all other options, Charlotte’s parents tried to find a doctor that would prescribe their 5-year-old a medical marijuana card. It was, unsurprisingly, no easy feat, but they eventually found two that were willing to sign off on the idea, in part because the potential dangers of even low-THC marijuana on a child’s brain seemed to pale in comparison to the damage already wrought by Charlotte’s seizures and previous regimens of medication. This being the early 2010s, well before the CBD and marijuana concentrate boom, Charlotte’s parents had to buy two ounces of high CBD weed and have a friend extract the oil.
“We were pioneering the whole thing; we were guinea-pigging Charlotte,” Paige told CNN in 2013. “This is a federally illegal substance. I was terrified to be honest with you.” But, the treatments began to work almost immediately: “When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige added.
Charlotte’s story quickly garnered plenty of media attention and, in the coming years, families with kids in similar situations began moving to Colorado to legally treat their children’s seizure disorders with CBD. Soon, more states began to pass laws that made CBD more readily available, while at the federal level, hemp — which can be used to produce CBD along with marijuana — was removed from the Controlled Substances Act in 2014, and in 2018 Congress approved a farm bill that legalized industrial hemp.
The Figi family played a major role during this sea change, specifically through their work with the Realm of Caring Foundation, which helps those who can’t afford medical marijuana gain access to potential treatments. The Stanley Brothers, one of Colorado’s biggest growers, who helped the Figi family launch Realm of Caring, also concocted a high CBD strain in Charlotte’s honor, fittingly named Charlotte’s Web. Last year, at the age of 12, Charlotte even became the first child to appear on the cover of the weed culture magazine, High Times.
“Your work is done Charlotte, the world is changed, and you can now rest knowing that you leave the world a better place,” Realm of Caring wrote in their post. “With broken hearts, we cradle the [Figis] in our thoughts and prayers. Thank you, Charlotte, for dedicating your life to the service of a greater good. We promise to carry on the mission.”