My journey to learn everything possible about CBD has led me to discover the short but inspiring life of a little girl named Charlotte. A girl who made more of an impact in 13 years than most of us will make in a lifetime. Her story made the world question age old stereotypes on cannabis and started the CBD medical movement.
Charlotte and Chase Figi, twins, were born in 2006 and lived in Colorado Springs, CO. Charlotte had her first seizure when she was only 3 months old. The seizures kept coming, hundreds per week. The family and doctors were stumped. At the age of 2 she was diagnosed with Dravet Syndrome following a test for the SCN1A gene mutation. This is a tough disease which presents as intense seizure. Her treatments included adapting to a ketogenic diet, anticonvulsant drugs, barbiturates, and benzodiazepines. Different strategies proved ineffective and by the age of 5 Charlotte required a feeding tube and had difficulty walking and communicating.
Desperate, her parents began to explore alternative treatments and came across a video of a boy in California who had success with cannabis oil in treating seizures.
Charlotte's parents, Paige and Matt found the Stanley brothers, marijuana growers in Colorado. The Stanley's were developing different strains of marijuana including some high in CBD and low in the psychoactive THC. In 2012, when Charlotte was given cannabis oil, the effects were nothing short of miraculous. Her dosage was optimized to 7-9 mg oil per kg of bodyweight. The seizures were reduced from hundreds per week down to 2-3 per month while she slept. Eventually the feeding tube was no longer needed and walking turned into riding a bicycle. Josh Stanley shares a powerful message at a TEDxBoulder on the hurdles faced in getting this powerful medicine to more children suffering pediatric epilepsy.
The publicity came. In 2013, CNN and Sanjay Gupta aired a documentary, Weed, and in an article Dr. Gupta stated, "We have been terribly and systematically misled for nearly 70 years in the United States, and I apologize for my own role in that...." But more importantly, her story and the science of CBD and Dravet Syndrome began helping others. In 2018, the US Food and Drug Administration approved CBD as a treatment of seizures associated with Dravet Syndrome, Lennox-Gastaut syndrome and Tuberous Sclerosis Complex (TSC). Its estimated over 15,000 people are taking CBD, Epidiolex.
We have been terribly and systematically misled for nearly 70 years in the United States, and I apologize for my own role in that
The Stanley brothers have formed the Realm of Caring Foundation which has a mission to invest and further study the potential benefits of cannabis and its potential applications.
Charlotte enjoyed 5 years without a gastronomy tube and 8 years free from potent pharmaceuticals. But in March of 2020, the Figi household all came down with a virus, and Charlotte was unable to beat it. Charlottes fight with the virus led to pneumonia, respiratory failure and ultimately cardiac arrest. Charlotte passed away on April 7, 2020. Although a COVID test was negative, she was treated as a likely COVID-19 case.
It was devastating news to family, friends, and Charlotte supporters around the globe. Two weeks later Governor Polis issued an executive order declaring, April 7th, Charlotte Figi Day and the Stanleys donated one million dollars worth of CBD products to those unable to afford them.
There is no doubt the Stanley brothers were deeply touched by Charlotte. Their memoriam can be found here but I am posting it below as well. As I read the words I can sense the connection between Charlotte and the brothers:
April 7, 2020
Charlotte was ten feet tall and carried the world on her shoulders.
Inspiring is a lacking word, as are courageous and vivacious and strong and beautiful.
She was divine.
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.
The infinite compassion of community members who sacrificed their time, resources, and ideas to tend her garden of love were instrumental in her care, but there was no one more committed than the selfless Paige, both a mother and a warrior, both a human and an angel. Charlotte’s cause was her family’s cause and created a foundation of plant-based health that breathed life into their daughter, and the countless sons and daughters like her.
Charlotte, then, became everyone’s daughter or sister or friend and enlivened empathy and love from anyone who had the privilege of hearing her story, as millions did. Her story built communities, her need built hope, and her legacy will continue to build harmony.
To Paige, Matt, Greg, Max, and Chase – we are humbled by your grace, as the fruits of your kindness have fed the world with love.
She was a light that lit the world. She was a little girl who carried us all on her small shoulders.
Her legacy lives in the garden, in the blooming of ideas, in the fragrance of compassion, in the greenery of nurturing us to be better humans in all ways, always.
What began as her story, became the shared story of hundreds of thousands, and the inspiration of many millions more in the journey of their betterment. Charlotte was and will be, the heartbeat of our passion, and the conviction that the dignity and health of a human being is their right.
Charlotte, you are the light of our lives.
Thank you for your life, your bravery, and your beautiful soul.
We love you, Charlie.
-Joel, Jared, Jesse, Jon, Jordan, Josh, and Austin Stanley
-updated March 13, 2021