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Charlotte Figi
2006-2020

ISSUE:
Page:
74-75

Charlotte Figi, the girl who became a symbol of hope for the medical cannabis (Cannabis spp., Cannabaceae) movement, died on April 7, 2020, after one last seizure. Her short but meaningful life ended peacefully in the arms of her mother, Paige. She was just 13.

“Some journeys are long and bland, and others are short and poignant and meant to revolutionize the world,” Realm of Caring, a nonprofit organization that Paige co-founded, posted to its Facebook page in remembrance of Charlotte.

Charlotte was born on October 18, 2006. After having her first seizure at three months old, she was confirmed to have an SCN1A gene mutation and was diagnosed with Dravet syndrome. This rare, severe, early-onset, lifelong form of epilepsy causes frequent, difficult-to-control seizures of multiple types. Seizures associated with Dravet syndrome are among the most resistant to treatment. In fact, despite trying many medications, Charlotte eventually was having more than 300 generalized tonic-clonic seizures per week. (Formerly called “grand mal” seizures, tonic-clonic seizures combine the characteristics of tonic [stiffening] and clonic [rhythmical jerking] seizures. A seizure is “generalized” if it starts in both sides of the brain.)

Charlotte had significant cognitive and motor impairments, struggled to walk and talk, and required a feeding tube and full assistance with daily living. On multiple occasions, she had to be resuscitated after her heart stopped. “We were told by the doctor there was nothing left to try pharmaceutically,” Paige was quoted as saying.1 Charlotte reportedly was not expected to live past age eight.

Her parents, residents of Colorado, heard about a parent in California who successfully treated their epileptic child with medical cannabis. Paige began researching and became interested in cannabidiol (CBD, a psychoactive but non-intoxicating constituent of cannabis), which seemed promising for treating seizures. However, physicians and cannabis industry members discouraged Paige from pursuing medical cannabis because Charlotte, who was five at the time, reportedly would be the youngest medical cannabis patient in Colorado.

Undeterred, Paige found Joel Stanley of Colorado, who, with his six brothers, was breeding a rare chemovar (chemical variety) of cannabis that is high in CBD and low in tetrahydrocannabinol (THC, the main psychoactive and intoxicating constituent of cannabis). The Stanley brothers eventually renamed the chemovar “Charlotte’s Web” after Charlotte, whose story would emphasize the potential of their plant.

After receiving permission from physicians and the reluctant state of Colorado, Paige started giving Charlotte low doses of a sublingual preparation of a Charlotte’s Web extract and slowly increased the dose. “I didn’t think it was going to work,” Paige was quoted as saying.1 But, for the first time since Charlotte’s seizures started, she was seizure-free for seven consecutive days after starting the cannabis preparation. Twenty months later, she was having only two or three nocturnal generalized tonic-clonic seizures per month, instead of one seizure about every 30 minutes before cannabis.

Charlotte started eating and drinking on her own, sleeping soundly, and walking and talking. Video clips show her laughing and playing. Cannabis also improved her autistic behaviors, including aggressiveness, poor eye contact, poor social interaction, and self-stimulating behavior. She was also able to wean off clobazam, a benzodiazepine used to treat seizures, which was the only medication she was taking when she started cannabis. To see if Charlotte’s seizures would recur without cannabis, Paige weaned her off Charlotte’s Web multiple times, and her seizures returned each time.

In 2013, Charlotte’s story was spotlighted in CNN’s highly publicized WEED documentary, which helped open people’s eyes to the potential of medical cannabis and diminish skepticism. After personally observing how dramatically cannabis improved Charlotte’s quality of life, CNN medical correspondent Sanjay Gupta, MD, who hosted the documentary, admitted that he had been wrong, saying that preventing people from accessing medical cannabis “would not just be a medical failing but a moral failing.”2

According to The Denver Post,3 after the 2013 documentary, many families, sometimes referred to as medical cannabis refugees, began migrating to Colorado to find relief for their afflicted children. Colorado reportedly does not track how many families move there to treat their children with medical cannabis, but The Denver Post estimated it to be in the low hundreds. Many or most of them were motivated and inspired by Charlotte’s story and other stories and came with hope of having similar success. For these families, Colorado is a draw because of its large medical cannabis system, which allows children to be registered patients, and its growing community of families with children who have various conditions, including cancer, autism, and Crohn’s disease. However, most, like Charlotte, have severe childhood forms of epilepsy: Dravet syndrome, Lennox-Gastaut syndrome, or Doose syndrome.

In 2012, Paige co-founded Realm of Caring, which funds and conducts research to “learn more about cannabis and its effects while legitimizing the therapy,” according to its website. Charlotte’s story also has helped inspire new medical cannabis legislation. For example, in 2014, Florida legalized the use of Charlotte’s Web to treat diseases like epilepsy.

In June 2018, the US Food and Drug Administration (FDA) approved Epidiolex, a pharmaceutically prepared, standardized oil-based CBD oral solution produced by GW Pharmaceuticals (Carlsbad, CA/Cambridge, UK), for the treatment of seizures associated with Dravet syndrome and Lennox-Gastaut syndrome. So, children like Charlotte can now benefit from a cannabis-derived prescription medicine with less severe side effects than other conventional antiseizure medications. Epidiolex is the first drug approved by the FDA for the treatment of Dravet syndrome and the first cannabis-derived prescription medicine available in the United States.

In 2019, CBD supplements experienced $90.7 million in retail sales in the US natural channel. Some industry members credit Charlotte’s story with playing a significant role in CBD’s current popularity.

In March 2020, the Figi family became ill with what they believe was COVID-19, but they didn’t meet the requirements to be tested. The rest of the family recovered, but on the morning of April 7, Charlotte had a seizure and was taken to the hospital, where she died surrounded by loved ones.

“She was divine,” the Stanley brothers wrote of Charlotte on their 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 Charlotte, cannabis provided relief like nothing else did and allowed her to do things she enjoyed, like hiking, tandem biking with her mother, and riding horses with her twin sister, Chase. Charlotte caused people to pay attention to the potential of medical cannabis and reconsider the stigma attached to it, but she never asked to be part of the cannabis conversation. In fact, she was unaware of it. “She found incredible resolution from cannabis, but she didn’t know,” Paige was quoted as saying.1 “She had a good life.”

Charlotte is survived by her mother, Paige; father, Matt; brother, Max; twin sister, Chase; and her mother’s husband, Greg Iafeliece. The Figi family asks that any donations be made to Realm of Caring to continue Charlotte’s legacy.

References

  1. Garcia SE. Charlotte Figi, Who Helped Popularize CBD for Medical Use, Dies at 13. The New York Times. April 9, 2020. Available at: www.nytimes.com/2020/04/09/us/charlotte-figi-dead.html. Accessed June 29, 2020.
  2. Charlotte Figi, the girl who inspired a CBD movement, has died at age 13. YouTube website. Available at: www.youtube.com/watch?v=JUCaBvF0_YM. Accessed June 29, 2020.
  3. Ingold J. Desperate Journey. The Denver Post. Available at: extras.denverpost.com/stateofhope/#part2. Accessed June 29, 2020.