Charlotte Figi, whose life-long battle with a rare seizure disorder led to, died Tuesday after members of her family contracted an unspecified "virus," according to a post on her mother's Facebook page. Figi was 13 years old.
"Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love," the post said. Realm of Caring, a non-profit that funds and conducts cannabis research co-founded by Charlotte's mother, Paige Figi, also shared news of her death.
On March 26, Paige Figi wrote on Facebook that all five family members were sick with "fevers, pains, coughs" and were "struggling to breathe." Figi did not identify their illness, but said that "it's no joke, the sickest we have ever been."
"I'm starting to feel better, starting to smile again, able to see some light through the end of my dark tunnel ... Charlotte has been solidly parked in-arms for weeks, her favorite place," she wrote. A week later, however, her husband shared on her page that most of the family had recovered "from a month of virus but our little Charlotte hasn't improved."
"She had a couple days where she seemed to turn the corner but then she took a dive. We used all of our tricks the past few days but nothing worked," he wrote. "... In all my years working in facilities and in the field I have never felt as helpless as I have holding her when she is seizing and these past few very tough days."
On April 5, two days before she died, a post on her mother's page said that Charlotte had been discharged from the hospital. "This kid...heh heh...she is one tough SOB," she wrote.
At just three months old, Figi began to suffer from Dravet Syndrome, "a rare, drug-resistant epilepsy that begins in the first year of life in an otherwise healthy infant," according to the Epilepsy Foundation. The syndrome caused Figi to have as many as 300 grand mal seizures a week, putting her in a wheelchair, barely able to speak, and undergoing repeated cardiac arrests.
Dravet seizures don't respond well to traditional seizure medications, leading sufferers' loved ones to seek out the "best combination" of medication to treat and prevent seizures, according to the Epilepsy Foundation. Doctors were out of ideas to help Figi when her parents began researching the benefits of medical cannabis.
The family found the Stanley Brothers, medical marijuana growers in Colorado who bred a plant with low-THC — the ingredient that makes users high — and high CBD. Figi's quality of life changed drastically after taking the medicine, her family said. "A year ago, she could only say one word, now she says complete sentences," her father Matt Figi. The extract that Figi took was coined "Charlotte's Web," in her honor.
Figi's remarkable recovery inspired her family to travel the country, pushing for medical marijuana laws or statutes that would allow for high-CBD pot strains to be grown outside of Realm of Caring, as well as the advocacy-focused non-profit Coalition For Access Now., where medical marijuana was legalized in 2000. Her mother co-founded the non-profit
Many doctors were initially hesitant to prescribe medical marijuana to treat epilepsy — since THC can trigger seizures — and especially to children. But in 2018, the FDA approved Epidiolex, a drug made from CBD, as one of two new mediations specifically to treat Dravet syndrome.