Charlotte Figi, the Colorado Springs girl who, as a gleeful and fragile child, launched a movement that led to sweeping changes in marijuana laws across the globe, has died from complications possibly related to the new coronavirus.
She was 13.
Charlotte’s death was announced by a family friend Tuesday night on the Facebook page of her mother, Paige Figi.
“Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love,” read the post, which also asked the public to respect Figi’s family’s privacy.
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.
Early Wednesday, the Realm of Caring Foundation, an organization co-founded by Paige Figi, wrote on Facebook that Charlotte’s death was due to complications from COVID-19. But the organization later amended the post to remove the reference to the coronavirus.
If her death is verified by public health officials as related to COVID-19, Charlotte would be the youngest victim of the pandemic in Colorado so far. A spokeswoman for El Paso County Public Health said Wednesday that the department cannot comment about individual cases. But she said the county, at least yet, does not have any confirmed pediatric deaths from COVID-19.
“Your work is done Charlotte, the world is changed, and you can now rest knowing that you leave the world a better place,” the Realm of Caring Foundation wrote on Instagram.
Dravet syndrome is a rare and debilitating form of epilepsy that first appears when children are young. From the time she was just 3 months old, Charlotte suffered hundreds of small and large seizures a day. Pharmaceutical treatments proved ineffective, and, by the age of 5, Charlotte struggled to walk and talk and required a feeding tube.
After hearing about a family in California that treated their child’s seizures with oil made from cannabis, Paige Figi began to research the possibility and soon connected with a Colorado Springs medical marijuana dispensary owner named Joel Stanley, who, along with his brothers, had helped developed a strain of cannabis rich in cannabidiol, or CBD, a non-psychoactive compound.
Paige Figi said Charlotte’s seizures reduced dramatically when she began taking CBD oil, so much so that Paige weaned Charlotte off anti-epileptic pharmaceutical drugs. Charlotte soon was able to walk, play and feed herself. Her story was featured in academic literature. Last month, Paige posted on Facebook that it had been five years since Charlotte’s feeding tube was removed.
In her honor, the Stanley brothers named their CBD product Charlotte’s Web.
Charlotte’s story took on global significance, though, in 2013, when she appeared in a documentary by CNN’s Dr. Sanjay Gupta. The documentary showed Charlotte laughing and playing, her seizures quelled by CBD.
For families across the world whose children suffered from Dravet and similar conditions, the video clips were a revelation and a hope — and hundreds of families moved to Colorado seeking CBD for their children under the state’s medical marijuana laws. The migration was so large, families had a name for themselves: marijuana refugees.
Charlotte soon became a prominent face of the medical marijuana movement across the country and the world, and Paige Figi and the Stanley brothers became outspoken advocates for legalizing CBD. Laws to do that swept to victory in statehouses, even in conservative states.
Today, 47 states now have laws permitting CBD products in some form. Hemp is legal federally. Charlotte’s Web is one of the best-selling CBD products on the market, posting $95 million in revenue last year. And Charlotte’s story has been credited with softening opposition to broader marijuana legalization, as well.
“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 posted Tuesday night on the Charlotte’s Web website. “… 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. 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.”
Condolences flooded Paige Figi’s Facebook page Tuesday night — a testament to the following Charlotte had gained over the years. Among those paying tribute to Charlotte online was the Epilepsy Foundation, which, after early hesitancy, came to embrace the therapeutic potential that CBD could hold for some children with epilepsy.
“Our deepest condolences go to the Figi family,” the foundation wrote on Twitter. “We encourage everyone to respect the family’s privacy at this very difficult time.”
Updated at 2:50 p.m. on Wednesday, April 8, 2020: This story and headline were updated to include new information provided by Charlotte Figi’s family about the medical circumstances surrounding her death.