Remembering Charlotte Figi

For many, she was the figurehead of an emerging movement, a symbol of the value of alternative medicine. To others, Charlotte was living proof that cannabis could be used as a medicinal substance and had clinical applications, beyond simply being a recreational drug.

To her parents Paige Figi and Matt Figi, though, Charlotte was a beloved daughter, and our condolences go out to them and their family in their time of grieving.

Charlotte passed away on April 7^th, 2020. She was thirteen years of age.

Dravet’s syndrome

Charlottte had Dravet’s syndrome, a devastating illness that causes difficult to treat seizures. Dravet’s syndrome usually arises in early childhood, and Charlotte had her first seizure at only 3 months old of age. Tragically, Charlotte was suffering from around 300 grand mal seizures a week, and her medical team was stumped in finding an adequate treatment. Charlotte was also wheelchair bound and had difficulty with speech as a result of her condition.

Dravet’s syndrome is a drug-resistant disease with no standardized course of treatment that works across all cases. Instead, medical teams must work to find a unique combination of drugs and medicine for each individual.

Charlotte, her parents, and her doctors had tried every possible treatment to help contain the Dravet syndrome seizures, with little success.

Charlotte’s mother Paige would not give up, however. She continued to research, and eventually came across information that led her to believe that CBD could help her daughter. The year was 2012, and medical cannabis carried a strong taboo and was illegal in many states, even for medicinal purposes. Luckily, the Figi’s lived in Colorado Springs, Colorado where cannabis could be prescribed to patients for medicinal purposes. Though Colorado would eventually legalize pot in 2014, not just any doctor would prescribe it, and given that marijuana was not necessarily a standard treatment for Dravet’s syndrome, Charlotte’s parents had to search to find a physician who would hear them out.

Giving Medical Marijuana a Chance.

Thankfully, Paige and Matt were able to get two doctors to prescribe medical cannabis. Through the process of trialling different strains, they tried a new type of cannabis that had recently been created by one of Colorado’s largest producers of marijuana, the Stanley Brothers. This new strain was cannabis bred with industrial hemp and showed much promise for medicinal use.

The Stanley Brothers initially bred standard marijuana with high levels of THC for the purpose of bringing pain relief to people suffering from cancer and other illnesses. They would go on to experiment with other strains low in THC, but these strains weren’t popular as they were thought to be less effective than standard THC laden cannabis. A strain with particularly low THC and high CBD content sat in one of their greenhouses, but was unpopular: “No one wanted it because it couldn’t get you high,” reported Joel Stanley, eldest brother and company head. They aptly named the strain Hippie’s Disappointment. The concentrated oil of Hippie’s Disappointment had some preliminary success in the treatment of seizures, but it wasn’t until Paige Figi came knocking, searching for a CBD-packed cannabis strain to help her sick daughter with her Dravet’s syndrome that the Stanley Brothers would begin to see the value in Hippie’s Disappointment.

Charlotte’s Web

After beginning to use Hippie’s Disappointment, Charlotte amazingly found relief from her grand mal seizures, dropping from 300 a week to just 3 a month.

They would eventually rename the strain ‘Charlotte’s Web’ after Charlotte Figi.

At the time In 2012, the medicinal use of cannabis products was illegal in many states in America. Charlotte’s story, however, began to spread far and wide, and people in need of treatment began travelling to Colorado where they could be prescribed low THC, high CBD cannabis products for medical marijuana treatment.

Charlotte Figi started a CBD movement.

In 2014 Charlotte’s story gained more publicity when it was told in the documentary film Weed. Written and produced Dr. Sanjay Gupta – a neurosurgeon and chief medical correspondent to CNN -Weed started off as an introspective mission by Gupta to better understand cannabis. Dr. Sanjay Gupta wrote an article in 2009 entitled “Why I would Vote No on Pot”; clearly, he wasn’t pro-cannabis at that time. During the creation of Weed, however, Gupta made his way around the globe, meeting with medical experts, cannabis advocates and growers and patients who use cannabis to help ease their symptoms. In an article for CNN he wrote during the work on his film, Gupta explained how his perspective on cannabis changed through the creation of Weed. Prior to working on the film, he said that he agreed with the majority of medical practitioners (at the time) in their opinion that cannabis had a high potential for abuse a little to no medical properties.  Dr. Gupta cited meeting Charlotte and hearing her story as a catalyst in changing his mind, as well as a jumping off for point hearing the stories of thousands of other individuals just like her.

Since then, marijuana laws have begun to change worldwide. Many countries have fully embraced legalization, not just for medicinal use, but recreational use as well. It is hard to overstate the incredible role Charlotte and her family have had in that transformation since the beginning of their journey.

Charlotte’s prognosis was never a good one. People with Dravet’s syndrome, a form of epilepsy, have varying degrees of developmental disability, seizures, and a reduced lifespan. Charlotte and her family were told and she was not likely to make it past the age of eight years old. Despite that, Charlotte and her family never gave up hope, and refused to let the disease define them.

In her short time here, Charlotte was the light in so many lives. The Stanley brothers – the creators of Charlotte’s Web and friends of Charlotte and her family – posted the following on their website in memorandum:

“Inspiring is a lacking word, as are courageous and vivacious and strong and beautiful. She was divine. She grew, cultivated by a community, protect 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.”

A Turn For The Worst

In March of 2020, the Figi family had collectively fallen ill with a host of symptoms eerily similar to the COVID-19 coronavirus that had sprung up worldwide that month. They were suffering from fever, breathing problems, stomach issues, coughs and aches and pains. Naturally, they worried that they had contracted COVID-19. The family recovered, but the sickness aggravated Charlotte’s seizures.

On March 26^th, Charlotte’s mother Paige wrote on her personal Facebook page:

“I’m starting to feel better, starting to smile again, able to see some light through the end of my dark tunnel… Charlotte has been solidly parked in-arms for weeks, her favorite place.”

One week later, though, Charlotte’s father Matt posted that the family had mostly recovered but Charlotte Figi had not. He stated:

“She had a couple days where she seemed to turn the corner but then she took a dive. We used all of our tricks that past few days but nothing worked…. In all my years working in facilities and in the field I have never felt as helpless as I have holding her when she is seizing and these past few very tough days.”

Charlotte was taken to hospital where she tested negative for the coronavirus. Her condition started to shift between recovery and decline. She would seem to do better only for symptoms – and seizures – to return again. She was eventually discharged from the hospital on a Sunday as she seemed to be doing better. On the following Tuesday, however, she had a seizure and was rushed back to the hospital. Tragically, she passed away that day with her loving family around her.

A post by a friend of the family – hosted on Paige’s Figi’s Facebook – read as follows after her passing:

“Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love. Please respect their privacy at this time.”

Charlotte will be dearly missed by her parents and her siblings, Matt and Chase.

Charlotte’s Legacy Lives On

Charlotte’s success with medicinal cannabis and her story catalyzed her mother Paige to found two non-profits: Realm of Caring and Coalition for Access Now.

On their website, Realm of Caring’s mission statement reads: “Empowering individuals, medical professionals, and the community through research-based education on hemp, CBD, medical marijuana, and THC”. Realm of Caring focuses on three key areas: community, education, and research. Realm of Caring provides funding and helps conduct research into cannabis, strives to provide empowerment through education to people and consumers of cannabis to help them find the products and medicine they need, and to help healthcare professionals stay abreast of the latest treatment options and research. They also state that they seek to spread the facts about cannabis through engagement with the community.

Paige’s other non-profit is Coalition For Access Now. Coalition For Access Now is a non-profit that represents families who seek to spread awareness and education to the public as well as lawmakers regarding natural antidotes, therapies, and treatment options sourced from cannabis. They explained on their website:

“As families whose children suffer from debilitating health issues and who have experienced firsthand the benefits of these treatments, we seek to raise awareness and encourage policies that would lead to greater access for those in need.”

They explain that they have one central mission: “to empower families and give them access to hope NOW!”. Their website states that they seek to act as a network for all individuals wanting to have their voices recognized by governments at all levels

The Coalition For Access Now ultimately strives to put an end to families facing the “devastating choice” between seeing their child’s health degrade and becoming a “medical refugee” (where they must leave their home states and cities to gain access to the medical treatment they need).

Thank You, Charlotte

Thanks to Charlotte and her inspirational story, the Charlotte’s Web Medical Access Act was proposed in 2015 by Congressman Scott Perry (R-PA) with 18 co-sponsors from both democrats and republicans. The legislation sought to change the Controlled Substances Act and exclude CBD and cannabidiol-rich plants from the definition of cannabis and marijuana. The bill was amended again in 2017.

They also proposed a bill in the senate, the S. 1008 bill to also amend the Controlled Substances Act to differentiate CBD and CBD-rich plants from marijuana.

In 2018, the US senate passed the Farm Bill (also known as the Agriculture Improve Act of 2018) which de-scheduled CBD from the Controlled Substances Act for the first time.

In 2018, the US FDA legalized a CBD-based drug named Epidiolex to be used in treatment of Dravet syndrome, thanks to Charlotte and her story, as well as the efforts of her parents.

Continued Inspiration

For many, Charlotte is a symbol of strength and courage; an innocent girl with a terrible disease who faced all her difficulties with grace and joy. Charlotte Figi is also a symbol of change for individuals who advocate for alternative health treatments that may be outside of the standard realm of current mainstream medicine. Charlotte Figi highlights the importance of politicians, medical practitioners and law-makers keeping an open-mind with regard to treatments that may have stigma around it, such as cannabis.

Charlotte spent her time riding a tandem bike with her mother and playing with her twin, Chase, who loved to give Charlotte manicures and paint her nails. She will be greatly missed.