A young girl who inspired changes to medical marijuana laws in the United States has passed away. Charlotte Figi suffered from Dravet Syndrome, a lifelong form of epilepsy that starts in infancy. When she was just 5 years old, her use of CBD to treat her disease catapulted her into the spotlight, until she became the face of a movement. She passed away April 7th, at age 13.
Charlotte’s family informed followers on Facebook about the tragic loss.
“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.”
Also called Severe Myoclonic Epilepsy on Infancy (SMEI), Dravet syndrome requires constant care, and holds a 15-20% mortality rate. The rare disease goes beyond severe, frequently, and prolonged seizures. The Dravet Foundation lists these other issues commonly associated with SEMI:
- 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
At age 5, Charlotte was having nearly 50 seizures every single day. Her mother, Paige Figi, told the New York Times that the little girl was wheelchair-bound and had to be intubated just to eat.
She’d had brushes with death before, having to be resuscitated after her heart came to a complete stop on several different occasions. After dozens of different medications let the Figi family down, they turned to CBD.
The change was miraculous. After starting CBD treatment, Charlotte went a full 7 days without having a seizure, when before she had over 300 a week. As the treatment continued, Charlotte was able to begin walking, start talking, and even eat without a feeding tube. Her seizures hit less and less often, eventually going down to just once a month.
In the end, the often fatal disease is not what took Charlotte Figi’s life, according to her family. Her mother believes complications from COVID-19 are to blame.
Paige Figi explained the circumstances in a Facebook post the day the little girl passed away.
“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.
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.”
A report released 4 days after Charlotte’s death says COVID-19 tests may give false-negative results as often as 30% of the time.
Charlotte’s story was featured in a documentary from CNN called ‘Weed.’ After that, other children who experienced similar results using CBD to treat seizures also shared their points of view.
Now, there are more than 400 children on Colorado’s Medical Marijuana Registry including many under the age of 2.
When Charlotte’s family first started looking for a hemp provider who could help them extract THC, a man named Joel Stanley stepped up. In 2011, he and his brothers founded a company named Charlotte’s Web. The cannabis product manufacturer offers a CBD Isolate that is completely free of THC.
Charlotte’s Web refers to the proprietary hemp genetics the Stanley brothers developed. This particular variety was originally called “Hippie’s Disappointment” as a joke about the lack of THC, but was renamed to honor Charlotte. Today, the company refers to its CBD as “The Wold’s Most Trusted Hemp Extract.”
Charlotte’s Web now features a beautiful “In Memoriam” page for Charlotte Figi, linked right at the top of its website. It’s as heartbreaking as it is heartfelt. It reads,
“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”