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Charlotte Figi, 13-year-old Coloradan who inspired CBD reform, dies after family suspects she contracted coronavirus

Charlotte Figi, the young Colorado Springs girl whose battle with Dravet syndrome inspired changes to medical marijuana laws across the country and helped popularize CBD, has died after suffering an illness her family suspects was the new coronavirus. She was 13.

“Charlotte is no longer suffering,” a family representative wrote on Facebook on Tuesday night. “She is seizure-free forever.”

In a statement provided to The Denver Post, Charlotte’s mother, Paige Figi, said the whole family got sick in early March, but because their symptoms did not all fit within the criteria for COVID-19, they were told to self-treat at home. Charlotte was admitted to the pediatric intensive care unit at a Colorado Springs hospital on Friday after her symptoms worsened and was treated on the floor specifically designated for COVID-19 patients.

Charlotte was tested for the novel coronavirus that day, but the results were negative, Figi said. She was discharged from the hospital on Sunday when her symptoms seemed to improve.

On Tuesday, however, Charlotte suffered a seizure that resulted in respiratory failure and cardiac arrest, Figi said.

“Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case,” Figi said in the statement. “Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully.”

A Facebook post by Realm of Caring, the nonprofit organization co-founded by Charlotte’s mother that focuses on medical cannabis research and education, originally attributed the girl’s death to “COVID-19 complications.” The post has since been edited to remove that language.

Michelle Hewitt, spokeswoman for El Paso County Public Health, on Wednesday said there had been no confirmed pediatric COVID-19 deaths in the county. The Colorado Department of Public Health and Environment has not announced the death of anyone that young related to the coronavirus, though such announcements can lag by days as deaths are investigated.

Charlotte was one of Colorado’s many medical marijuana refugees, whose family moved to the state following the legalization of cannabis. From the time she was an infant, she suffered from frequent and severe seizures because of Dravet syndrome, including many that required hospitalization. But at age 5, Paige Figi gave her cannabidiol, the non-psychoactive compound in cannabis known more commonly as CBD, and Charlotte’s condition changed overnight.

“Charlotte slept soundly for the first time in years. She went seven days without a seizure. Over time, the seizures dropped from thousands a month to just a few. After not speaking for six months, she started talking again,” The Denver Post previously reported.

Charlotte’s journey was famously chronicled in a CNN documentary that inspired families like hers to try CBD, thrusting the relatively unknown cannabinoid into a national spotlight. The high-CBD strain of cannabis that helped changed her life was named Charlotte’s Web in her honor.

Research into CBD had been hampered by cannabis’ status as a Schedule I drug, but Charlotte’s story led many states to pass their own laws regarding CBD. Just recently, the Drug Enforcement Agency removed Epidiolex, the only CBD-derived medication approved by the Food and Drug Administration, from the scheduled substances list.

“What began as her story, became the shared story of hundreds of thousands, and the inspiration of many millions more in the journey of their betterment,” the Charlotte’s Web team wrote in a Facebook post eulogizing the young girl. “Charlotte was and will be, the heartbeat of our passion, and the conviction that the dignity and health of a human being is their right.”

Others in the medical cannabis space remembered Charlotte on Wednesday, with tributes and condolences to her family.