Charlotte Figi: The girl whose story inspired the use of CBD for Epilepsy

Charlotte Figi, the girl who carried the world on her shoulders and whose battle with a rare form of epilepsy inspired the CBD movement, has died recently, aged 13.

Charlotte was three months old when she got her first catastrophic seizure, soon before being diagnosed with Dravet syndrome, a rare form of epilepsy that starts in infancy and cannot be controlled by medication. Charlotte was battling with 300 seizures a week, one every 30 minutes, by the age of 5. 

She was in a wheelchair and used a feeding tube because she could not swallow. Her heart had stopped on several occasions. After trying dozens of medications that did not work, Charlotte’s family started researching the effects of CBD, the non-psychotropic compound found in cannabis. Her mother, Paige, found that the non-intoxicating cannabinoid was being used to treat epileptic patients. In 2012, the family located cannabis growers in Colorado, who were breeding hemp, a special strain rich in CBD and low in THC, who agreed to extract oil from fully grown plants. 

Soon after she began taking the CBD Oil, the seizures dropped to once a month; she started making eye contact, talking and even walking.

CBD for Treating Epilepsy

Charlotte’s story made headlines, inspiring other epilepsy patients to follow her lead and treat seizures with CBD oil. In 2013, the chief medical correspondent on CNN, Dr. Sanjay Gupta, interviewed Charlotte for his documentary special Weed and promoted the use of CBD as a treatment option for epilepsy.

In the documentary, she was shown to be a perky child who was overcome by dreadful seizures, which were curbed with Charlotte's Web, the strain named after her. Joel Stanley, the hemp grower who helped Charlotte’s battle with epilepsy, founded Charlotte’s Web CBD, a company named after her.

“What began as her story, became the shared story of hundreds of thousands,” Stanley wrote on the company’s Facebook page. “Her story built communities, her need built hope, and her legacy will continue to build harmony.” Charlotte’s story led to the ultimate approval of cannabidiol in 2018, by the Food and Drug Administration for the treatment of seizures caused by Dravet syndrome―the first drug approved by the F.D.A. for the condition.

In March 2020, a member of Charlotte’s family exhibited Covid-19 symptoms but did not meet the requirements to be tested. In April, while the rest of the family was getting better, Charlotte’s condition reportedly worsened. 

Shortly after she was tested negative for the virus and was discharged from the Children’s Hospital in Colorado Springs, Charlotte had a horrific seizure and became nonresponsive. The seizure led her going into cardiac arrest. She was taken to the hospital where she died surrounded by love and family. Charlotte’s mother said Charlotte’s test for COVID-19 came a month too late. Only later, more accurate tests for the new disease were made available. 

Charlotte, without even knowing, has started a movement that helps millions of epilepsy patients to quell seizures. For nine years thanks to CBD  she had the opportunity to live a life with a close resemblance to that of any young girl, her mother said. Charlotte has been described as being adventurous, keen on taking hikes and riding a bike with her mother; she also enjoyed horse riding with one of her siblings.

"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."

“She found incredible resolution from cannabis but she didn’t know,” her mother said, “She had a good life.”

Cannabidiol (Epidiolex) is available for epilepsy treatment in most states, despite the status of many states not having legalized cannabis. Meanwhile, medical cannabis also shows a promise as a possible treatment option against COVID-19, the very disease that likely caused fatal consequences in Charlotte Figi’s case.