Charlotte Figi, the childhood cannabis hero, pronounced dead from seizure induced by suspected complication of COVID-19
By Tiffany Carwile
The world stands still as the news of the painful loss of young Charlotte Figi, the young girl whose grueling battle with seizures rewrote the rules of medicinal cannabis forever.
The nonprofit Realm of Caring, an organization that hones in on MMJ research, advocacy and education, credited Figi’s passing to complications of COVID-19, a newfound respiratory illness projected to be twenty times more lethal than the flu.
(Photo courtesy of a public post made by Realm of Caring's Facebook page)
On behalf of the family, a post was shared via the Facebook page of Paige Figi, Charlotte’s mother, that stated, “Charlotte is no longer suffering. She is seizure-free forever.”
UPDATE FROM PAIGE:
"We’d like to clarify some of the information that has been shared. Our entire family had been ill for close to a month starting early March, but did not initially fit all of the criteria for COVID-19 testing. For that reason, we were told to self-treat at home unless the symptoms worsened. Charlotte’s symptoms worsened, so she was admitted to the PICU on April 3rd. She was treated on the COVID-19 designated floor using all of the medical protocols set in place. On Friday April 3rd, she was tested, the results were negative for COVID-19 and discharged on Sunday April 5th when she seemingly began to improve. Charlotte had a seizure in the early morning on April 7th resulting in respiratory failure and cardiac arrest. Seizures are not uncommon with illness and paramedics were called returning us to the PICU. Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case. Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully." - Figi Family
A Hero is Born
Charlotte was a bright young girl from Colorado Springs, whose battle with seizures induced by catatonic Dravet Syndrome, a rare and unfortunate form of epilepsy resulting in lifelong, recurring and perpetual seizures, completely transformed the observation and conversation surrounding pediatric medical marijuana laws.
Born on October 8th, 2016, Charlotte Figi, was a hero in the cannabis community, her use of CBD to treat her seizures helped to inspire medical marijuana reform across the nation. On Tuesday April 7th, Charlotte was pronounced dead with COVID-19, yet to be confirmed via local coronary officials. Figi was 13 years old.
Many of us first met Charlotte back in 2013 via a CNN featured article that ultimately lead to a documentary, called WEED - Charlotte's Web Story Medicated Marijuana and Epilepsy.
Young Figi’s family moved to become one of many medical marijuana refugees in Colorado, following the state's legalization of medical marijuana in 2000. From the time she was an infant of only three months old, she suffered from frequent, prolonged, and intractable seizures via Dravet syndrome, many of which required extensive hospitalization.
Enduring lifelong seizures is the main, but not the only trademark of Dravet syndrome, with other comorbidities such as hindrance of developmental progress and irregular EEGs, cognitive decline may not be apparent until around two or three years of age.
This was the case with young Charlotte, by the time she was two years old the seizures were constant, and she began to acquire an array of comorbid conditions, including loss of vocality and fine motor skills.
According to the Dravet Syndrome Foundation, comorbid conditions commonly associated with Dravet syndrome include:
(Many comorbid conditions tied to Dravet, closely coincide with other neurological conditions, such as Autism Spectrum Disorder. A condition that is currently being petitioned to be accepted into Ohio’s Medical Marijuana Control Program.)
According to the documentary, between the ages of 2-4 years old the Figi’s tried an array of interventions, including changes in diet, acupuncture, and various medications to subside seizures including Valium, and Ativan, to no avail.
By age 5, her condition was exponentially worse, Charlotte was facing up to 300 seizures a week. Mother Paige Figi, after independent research on the use of cannabis treatment for intractable seizures, in an act of desperation gave her daughter cannabidiol, the non-psychoactive compound in cannabis, more known commonly as CBD.
Miraculously, Charlotte’s condition began to drastically change overnight, for the first time ever she was seizure-free for an entire day.
Turning A New Leaf
Charlotte was the youngest Coloradan to apply for a medical MMJ card. Her parents faced immense hurdles, as they sought to obtain a strain low in THC, the psychoactive compound, and high in CBD, the non-psychoactive cannabinoid in cannabis.
(Photo courtesy of HighTimes Magazine)
In Nov 2019, Figi, was dubbed one the HighTimes Female 50 most influential women in the cannabis industry, the first time the iconic cannabis and culture magazine has ever displayed a child as the cover. She was featured as the namesake of Charlottes Web. A world-renowned CBD manufacturing company run by the Stanley brothers, one of Colorado’s largest legal MMJ grow operations and dispensary owners.
The six brothers got their foot in the cannabis realm after their uncle was diagnosed with Pancreatic cancer in 2008. They were notorious cross breeders, and were able to generate a strain high in CBD and low in THC, but they had one issue; due to lack of demand, they couldn't sell it.
In 2011 Paige Figi met with the brothers and the high CBD strain, Charlotte's Web, was born.
Inspiring the Nation
A mission to help a little girl with uncompromising Dravet Syndrome, turned into something much, much bigger. And as it turns out, the needs of young Figi echoed the needs of an entire nation of children with chronically debilitating conditions and their loved ones.
A shining beacon of hope for many parents all across the nation to further research medicinal cannabis as a safe, viable option for their medically fragile children, including myself, actually. Inspired by young Charlotte’s heroic story, I began research on MMJ treatment for those diagnosed with Autism Spectrum Disorder. My son Jaxsyn, was diagnosed in April of 2016, at only two years old, with severe low-functioning Autism.
(Photo courtesy of author, Tiffany Carwile)
Similar to Dravet Syndrome, in addition to developmental disability, many with ASD live with comorbid conditions and core symptoms including intellectual disability, self-injurious behaviors, aggression, pain, SPD, apraxia, dyspraxia, epilepsy/seizures, mood/sleeping disorders, gastrointestinal/feeding disorders, inflammation, oxidative stress, as well as immune dysfunctions.
Like Dravet, Autism can also be viewed as an extremely complex set of medical conditions that are unique to each individual diagnosed, hence why it is classified as a spectrum condition. Of the existing qualifying conditions in Ohio, many of them are comorbidly implicated within Autism.
The fight in Ohio continues to persist by encouraging doctors, legislators and the general population to address underlying medical and comorbid conditions, versus attributing associated symptoms to one's original autism diagnosis. The Ohio State Medical Board is projected to determine what conditions could potentially become accepted into the program by as early as this summer. However, the COVID-19 pandemic may leave this timeline subject to change.
Hope on the Horizon
According to her parents, little Charlotte who suffered seizure-induced insomnia, slept soundly for the first time in years. Over the course of time, the seizures dropped from thousands a month to very few. And after not speaking for months, she started to talk again and engage in the world around her again.
Despite claims of cannabis being harmful to the developing brain, studies conducted by the renowned Raphael Mechoulum, an Israeli chemist and professor of medicinal chemistry, have shown definitive evidence of cannabis treatment as a potential, viable neuro-regenerative and neuro-protectant in those with traumatic brain injury, more commonly referred to as, TBI. A common comorbid condition for both Dravet Syndrome and Autism Spectrum Disorder.
Mechoulum has also led the charge on studies focusing on the efficiency of cannabis as an effective treatment for those diagnosed with Autism, documenting improvements in overall quality of life, including the reduction of seizure occurrence and frequency.
“I literally see Charlotte’s brain making connections that haven’t been made in years, almost seeming to build her brain, where before it seemed broken.”, Matt Figi, Charlotte’s father, stated in the 2014 documentary.
Research into MMJ, primarily for pediatric patients, has long been hindered and highly stigmatic due to cannabis’ current status as a Schedule I drug. However, Charlotte’s journey has forged the path for an array of states to accept CBD and even low-dose THC as a safe, practical treatment option for children who live with debilitating life long conditions. The DEA (Drug Enforcement Agency) has taken measures to approve Epidiolex, as the only CBD-derived medication that is FDA (Food and Drug Administration), removing CBD from the Schedule I substances list.
Her Legacy Lives On
What started out as Charlotte Figi’s story of redemption became the collective story of hundreds of thousands of struggling children, parents, caregivers and loved ones seeking an inspirational glimmer of hope. For many she was and will forever remain the trailblazer of pediatric cannabis. Her story is iconic, a symbolic testament to the basic human right for a greater quality of life. While we mourn the death of a hero, the legacy of Charlotte Figi will live on in our hearts and minds forever.
State and local health officials have yet to formally announce the cause of death as being directly associated with COVID-19 -- if confirmed, 13-year-old Figi would be the youngest person to perish in Colorado in correlation to the novel coronavirus. Her family asks for privacy in these trying times.