Charlotte Figi, a girl whose battle with severe epilepsy inspired changes in medical cannabis laws, died on Tuesday. She was 13.
Charlotte became the poster child for the benefits of CBD oil after using it to control the constant seizures experienced from her severe epilepsy, called Dravet syndrome. As a toddler in Colorado Springs, she experienced up to 300 grand mal seizures per week and used a wheelchair, before using CBD drastically reduced her rate of seizures.
"We are moved by the continual impact that Charlotte’s life has made shedding light on the potential of cannabis for quality of life," her mother, Paige Figi, wrote on Facebook.
An initial test for COVID-19 came back negative, but as Charlotte's condition worsened, hospital staff treated her as a "likely COVID-19 case," Paige added.
The whole family had been ill for nearly a month starting in early March, but did not qualify for coronavirus testing, she added.
However, after Charlotte's symptoms worsened, she was admitted to a hospital on April 3 and administered the test. While the result came back negative, there are concerns that COVID-19 testing may return false negatives at high rates.
After being released from the hospital on April 5, Charlotte had a seizure two days later that resulted in respiratory failure and cardiac arrest, Paige 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," Paige added. "Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully."
Charlotte's death, however, is not being counted in the county's COVID-19 numbers, or by Colorado state, which has not yet recorded the death of any children from complications related to the coronavirus.
“While we cannot speak to specific individual cases, there are no confirmed pediatric COVID-19 deaths in El Paso County," a spokesperson for the county told BuzzFeed News
The particular strain of medical cannabis with a high cannabinoid is called Charlotte's Web, in honor of the girl. The Figi family had moved to Colorado in order for their then-toddler daughter to access the drug legally and continued to speak publicly about its benefits in documentaries and news stories.
"Charlotte's story directly impacted thousands of families across the globe and has changed the face of cannabis in many ways, " Realm of Caring, a foundation for medical cannabis research and education, wrote on Facebook.
"Your work is done Charlotte, the world is changed, and you can now rest knowing that you leave the world a better place," the foundation added. "With broken hearts, we cradle the Figi's/Iafeliece's in our thoughts and prayers."