Charlotte Figi, the girl who inspired 'Charlotte's Web' oil and CBD movement, dies at 13

Charlotte Figi, a child with a rare form of epilepsy whose recovery inspired a medical marijuana reform, passed away on Tuesday at the age of 13. Her death was announced by a family friend on Charlotte's mother Paige Figi's Facebook page, a day after it was revealed that the Colorado teen had recently been hospitalized due to pneumonia, breathing problems and seizures. She was treated as a likely case of the novel coronavirus, her mother stated, although she tested negative for the virus.

"Charlotte is no longer suffering. She is seizure-free forever," the family friend wrote on Wednesday. "Thank you so much for all of your love. Please respect their privacy at this time." According to CNN, Charlotte became a symbol of the possibilities of CBD after her story was featured in the documentary Weed. She began suffering from Dravet Syndrome—"a rare, drug-resistant epilepsy that begins in the first year of life in an otherwise healthy infant"—at just three months old, reports CBS News. The condition caused her to have as many as 300 grand mal seizures a week, which resulted in her having to use a wheelchair, undergoing repeated cardiac arrests, and barely being able to speak. 

When doctors were unsuccessful in treating their daughter, the Figis began researching the benefits of medical cannabis which led them to the Stanley brothers—marijuana growers in Colorado—who were crossbreeding a strain of marijuana high in CBD and low in THC, its psychoactive ingredient. Charlotte's symptoms largely disappeared after she began taking the CBD oil, enabling her to play, eat and make connections like she hadn't before. The extract she took was later coined "Charlotte's Web," in her honor.

"Charlotte was ten feet tall and carried the world on her shoulders," the Stanley brothers wrote in a memorial on their website. "Inspiring is a lacking word, as are courageous and vivacious and strong and beautiful. She was divine. She grew, cultivated by a community, protected by love, demanding that the world witness her suffering so that they might find a solution. She rose every day, awakening others with her courage, and with that smile that infected your spirit at the cellular level... She was a light that lit the world. She was a little girl who carried us all on her small shoulders."

Charlotte's remarkable recovery inspired her family to travel the country advocating for medical marijuana laws or statutes that would allow for high-CBD pot strains to be grown outside of Colorado. Although many doctors were initially hesitant to prescribe medical marijuana to treat epilepsy, in 2018, the FDA approved Epidiolex—a drug made from CBD—as one of two new mediations specifically to treat Dravet syndrome.

In a post addressing Charlotte's death, her mother Paige wrote: Our entire family had been ill for close to a month starting early March, but did not initially fit all of the criteria for COVID-19 testing. For that reason, we were told to self-treat at home unless the symptoms worsened. Charlotte’s symptoms worsened, so she was admitted to the PICU on April 3rd. She was treated on the COVID-19 designated floor using all of the medical protocols set in place. On Friday April 3rd, she was tested, the results were negative for COVID-19 and discharged on Sunday April 5th when she seemingly began to improve.

Charlotte had a seizure in the early morning on April 7th resulting in respiratory failure and cardiac arrest. Seizures are not uncommon with illness and paramedics were called returning us to the PICU. Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case. Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully, she added.