Charlotte Figi — the young girl who became a leading symbol for the medical benefits of cannabis and CBD after it helped treat her rare form of epilepsy — died Wednesday. Figi’s death was confirmed in a message posted on her mother Paige’s Facebook page by a friend on behalf of the family.
Charlotte had recently been hospitalized due to pneumonia, breathing problems and seizures. She was treated as a likely case of Covid-19, her mother, Paige Figi, said Wednesday, although she tested negative for the virus.
“Charlotte is no longer suffering. She is seizure-free forever,” a family friend wrote on Paige Figi’s Facebook page, announcing Charlotte’s death. “Thank you so much for all of your love.”
Paige Figi had posted in recent weeks on Facebook about a serious illness that sickened all the members of her family with fever, coughing and breathing difficulties and sent Charlotte to the hospital.
In an update Wednesday to the Facebook post announcing Charlotte’s death, Paige Figi said the family did not initially meet the criteria for testing for COVID-19, the disease caused by the coronavirus, so they self-treated at home, as instructed. Charlotte’s symptoms worsened, and she was admitted to the hospital on April 3, where she was tested for COVID-19.
The test result came back negative — though the coronavirus test has been beset with false negatives. Figi wrote that Charlotte was treated on a floor designated for COVID-19 patients, “using all of the medical protocols set in place.”
She was discharged from the hospital on Sunday, after her condition seemed to improve. She suffered a seizure Tuesday morning resulting in respiratory failure and cardiac arrest, however, and she was taken back to the hospital, where she was treated “as a likely COVID-19 case.” Figi said seizures commonly occur along with illnesses in children like Charlotte with Dravet syndrome.
“Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully,” Paige Figi wrote.
Charlotte’s case and the advocacy of her parents played a significant role in drawing attention to the potential that a drug derived from cannabis could be used to treat epilepsy.
“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,” the announcement said.
At age 5, Charlotte suffered as many as 300 grand mal seizures a week, used a wheelchair, went into repeated cardiac arrest and could barely speak.
With doctors out of ideas, Paige Figi began calling medical marijuana shops.
Charlotte, had been given every other treatment option possible before her parents convinced two licenced doctors to prescribe medical marijuana to try out different strains on her. As their supply began to run out, they sought help from the Stanley brothers, one of Colorado’s largest marijuana growers.
The brothers had crossbred a strain of marijuana with industrial hemp and it showed potential for medical purposes. After a few years of testing different strains on Charlotte, they found one – now named Charlotte’s Web – reduced her seizures to just two or three per month, down from about 300 per week.
Federal prohibition of marijuana has limited research into marijuana and individual compounds’ health effects, but Charlotte’s family and hundreds of others shared their own experience using it for seizure disorders.
U.S. health regulators in 2018 approved the first prescription drug made with CBD to treat rare forms of epilepsy in young children.
“She was a light that lit the world. She was a little girl who carried us all on her small shoulders,” the Stanley brothers wrote in a tribute on the Charlotte’s Web website. “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.”
For most, the coronavirus causes mild to moderate symptoms such as fever and cough. But for some older adults and the infirm, it can cause pneumonia and death. Over 300,000 people worldwide have recovered.