Charlotte Figi, the young girl with Dravet’s syndrome whose story became the face of the healing properties of cannabidiol and helped change laws around the world, died Tuesday, likely of complications from the COVID-19 virus.
This is sad news indeed. Figi’s story was first seen on the Sanjay Gupta CNN specials, Weed and Weed 2, as viewers watched her epileptic seizures calmed by a high-cannabidiol (CBD) product named Charlotte’s Web by the Stanley brothers in Colorado. Her story and many others, along with studies and clinical trials, helped drive the eventual legalization of cannabidiol for certain epileptic conditions.
In many ways, Charlotte’s story was the catalyst behind the medical cannabis movement, which has blossomed into consumer-driven markets across the country. Cannabis consumers and activists owe Charlotte a great deal of gratitude. Her contribution to the movement has not gone unnoticed.
In 2018, the Food and Drug Administration approved Epidiolex (for which cannabidiol is the therapeutic ingredient) for the treatment of Lennox-Gastaut syndrome and Dravet syndrome seizures for children two years of age and older. Charlotte was key to that evolution and success.
To clear up any confusion over the circumstances of her death, the family shared this account:
“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 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 Figi family friend Tuesday posted publicly on Facebook: “Charlotte is no longer suffering. She is seizure-free forever.” May she rest in peace.