As the world stands still with COVID-19, the cannabis world was even further shook as they heard the news of the painful loss of Charlotte Figi, the young girl whose grueling battle with seizures rewrote the rules of medicinal cannabis forever.
A Statement From the Family
On behalf of the family, a post was shared to the Facebook page of Paige Figi, Charlotte’s mother, that stated, “Charlotte is no longer suffering. She is seizure-free forever.”
The family later shared the following statement, also to Facebook:
“Our family is grateful for the outpouring of love while we mourn the loss of our Charlotte. Charlotte had a catastrophic form of early childhood epilepsy called Dravet syndrome. We are moved by the continual impact that Charlotte’s life has made shedding light on the potential of cannabis for quality of life.
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 3. She was treated on the COVID-19 designated floor using all of the medical protocols set in place. On Friday, April 3, she was tested, the results were negative for COVID-19 and discharged on Sunday, April 5 when she seemingly began to improve. Charlotte had a seizure in the early morning on April 7 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.
We’d like to thank the staff at Children’s Hospital Colorado, Colorado Springs for their swift response and the impeccable and compassionate care that we received.”
Who was Charlotte Figi?
Born on October 8, 2006, Charlotte was a bright young girl from Colorado Springs. Her lifelong battle with seizures completely transformed the observation and conversation surrounding pediatric medical marijuana laws. Charlotte’s seizures were induced by catatonic Dravet Syndrome, a rare and unfortunate form of epilepsy resulting in recurring and perpetual seizures.
Charlotte Figi was uplifted as a hero in the cannabis community with her use of cannabis-derived CBD oil to treat her seizures. Her story helped to inspire medical marijuana reform across the nation.
On April 7, Charlotte was pronounced dead due to COVID-19, yet to be confirmed via local coronary officials. Figi was 13 years old.
Many of us first met Charlotte back in 2013 during a CNN featured article. That ultimately led to a documentary, called WEED – Charlotte’s Web Story Medicated Marijuana and Epilepsy. From the time Figi was an infant of only three months old, she suffered from frequent, prolonged, and intractable seizures as a result of 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 Figi. 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:
- Prolonged seizures
- Frequent seizures
- Behavioral and developmental delays
- Movement and balance issues
- Orthopedic conditions
- Delayed language and speech issues
- Growth and nutrition issues
- Sleeping difficulties
- Chronic infections
- Sensory integration disorders
- Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues.
According to the documentary, between her second and fourth birthdays, Figi’s parents tried an array of unsuccessful interventions, including changes in diet, acupuncture, and various other medications to cause the seizures to subside, including Valium and Ativan.
Several of the 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.
Turning Over A New Leaf
By age 5, Figi’s condition became exponentially worse as she began experiencing up to 300 seizures per week. After independent research on the use of cannabis treatment for intractable seizures and in an act of desperation, Figi’s mother Paige gave her daughter a dose of cannabidiol, the non-psychoactive compound in cannabis known commonly as CBD. Her parents reported that her condition miraculously began to change overnight. For the first time ever, Charlotte Figi was seizure-free for an entire day.
Figi 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.)
Enter the Stanley Brothers
In addition to inspiring medical cannabis entrepreneurs from around the world, hearing about Figi’s story was what launched the Stanley brothers, one of Colorado’s largest legal cannabis grow operations, to spring into action.
The company was founded by six brothers who got their start in the cannabis realm after their uncle was diagnosed with pancreatic cancer in 2008. The Stanley brothers were known to cross-breed cannabis plants and were knowledgeable enough about cultivation to generate a strain high in CBD and low in THC. A mission to help a little girl with uncompromising Dravet Syndrome turned into something much, much bigger.
Figi, who suffered seizure-induced insomnia, slept soundly for the first time in years with the addition of the CBD oil. Over the course of time, the seizures dropped from thousands a month to very few. And after not speaking for months, Figi started to talk again and engage in the world around her again.
“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,” said Matt Figi, Charlotte’s father, in the documentary.
Figi’s story went viral and led other families with children suffering from seizures to move to Colorado where the Charlotte’s Web strain could be purchased legally. 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.
Figi became a beacon of hope for many parents of sick children to further impact both legal policy and new research into medicinal cannabis as a safe, viable option.
Here in Ohio
As a mother of an autistic son here in Ohio, I began research on medical marijuana as a potential treatment for those diagnosed with Autism Spectrum Disorder(ASD). My son Jaxsyn was diagnosed in April of 2016, at only two years old, with severe low-functioning Autism.
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.
Hope on the Horizon
Despite claims of cannabis being harmful to the developing brain, studies conducted by 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 (TBI), a common comorbid condition for both Dravet Syndrome and ASD.
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.
Research into medical marijuana, 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 incept 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 approved, thus removing CBD from the Schedule I substances list.
As a parent of a child who needs cannabis fighting a similar fight in Ohio as the Figis did, I was viscerally moved by the news of Figi’s death. 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, Figi was and will forever remain the trailblazer of pediatric cannabis. Her story is iconic, a symbolic testament to the basic human right to 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.
In addition to serving as Founder/President of the Autism Alliance of Ohio, Tiffany Carwile is a cannabis and special needs activist versed in the history of cannabis policy, research, utilization, and wide spanning pharmacology. She is a Featured/Staff Writer for Ohio Capitol Journal, The Weed Blog, MedicateOH, and CannaMaps.
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