Charlotte Figi, the Girl with Epilepsy Who Inspired the Medical Marijuana Movement, Dies at 13
Figi died at the Children’s Hospital Colorado after suffering a seizure on Tuesday morning “resulting in respiratory failure and cardiac arrest,” according to a Facebook post from her mother, Paige Figi.
“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,” a statement shared on behalf of the family read.
Paige later explained in an update that her entire family — including Charlotte — had been sick since early March, but “did not initially fit all of the criteria for COVID-19 testing.”
After her daughter’s symptoms worsened, Charlotte was admitted to the pediatric intensive care unit on Friday, where she was “treated on the COVID-19 designated floor using all of the medical protocols set in place.”
Paige said Charlotte tested negative for COVID-19 and was discharged from the hospital on Sunday when she “seemingly began to improve.” However, the teenager returned to the PICU after a seizure on Tuesday.
“Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case,” Paige wrote. “Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully.”
Charlotte was diagnosed with Dravet syndrome, a rare form of epilepsy that causes frequent seizures, at a young age. At 3 years old, the young girl was suffering up to 60 seizures a day and “could not talk or walk or eat,” her mother told PEOPLE in 2014.
After trying an array of different treatments with no results, Charlotte’s parents turned to medical marijuana oil after dad Matt found a video online about a California boy who Dravet treated with a cannabis strain that was low in THC and and high in CBD, according to CNN.
“We were pioneering the whole thing; we were guinea pigging Charlotte,” Paige told the outlet in 2013. “This is a federally illegal substance. I was terrified to be honest with you.”
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According to Charlotte’s parents, their daughter’s health began to improve dramatically after taking the oil. “When she didn’t have those three, four seizures that first hour, that was the first sign,” Paige recalled. “And I thought well, ‘Let’s go another hour, this has got to be a fluke.'”
Her story led to the development of Charlotte’s Web, a particular strain of cannabis with a high cannabinoid to be used for medicinal purposes. It also helped create the Realm of Caring Foundation, a nonprofit organization that provides cannabis to those suffering from diseases — including epilepsy, cancer, multiple sclerosis and Parkinson’s — who cannot afford the alternative treatment.
After families with children who have similar disorders flocked to Colorado in order obtain CBD treatments legally, other states began to pass laws that made the substance more readily available to the public.
In 2014, hemp — which can be used to produce CBD — was removed from Controlled Substances Act. Four years later, Congress approved a bill that legalized industrial hemp.
“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,” a tribute for Charlotte posted on the Realm of Caring Foundation’s Facebook page read. “Your work is done Charlotte, the world is changed, and you can now rest knowing that you leave the world a better place.”