COLORADO SPRINGS — Charlotte Figi, a girl whose battle with a catastrophic form of epilepsy inspired changes in medical marijuana laws died Tuesday. She was 13 years old.
Charlotte suffered from a catastrophic form of early childhood epilepsy called Dravet syndrome.
Realm of Caring, a nonprofit that is re-imagining the way we think, talk, and respond to cannabis and the people who use it, said in a Facebook post, "Charlotte's story directly impacted thousands of families across the globe and has changed the face of cannabis in many ways."
In a Facebook post, her mother, Paige Figi, stated their 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. They were told to self-treat at home unless the symptoms got worse.
Charlotte's symptoms did get worse and she was admitted to the PICU on April 3, according to the Facebook post.
She was treated on the COVID-19 designated floor using all of the medical protocols set in place. She was tested and the results were negative for COVID-19 and discharged on April 5.
On Tuesday morning Charlotte had a seizure that resulted in respiratory failure and cardiac arrest. The family said that seizures are not uncommon with illness and paramedics were called returning Charlotte to the PICU.
In the Facebook post, Paige Figi said given the family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case.
Paige Figi is the founder and executive director of the Coalition for Access Now, a nonprofit organization led by families committed to educating the public and lawmakers on the health benefits associated with natural therapies derived from cannabis for chronic health conditions.
In a post on the Coalition for Access now website, Paige started giving Charlotte natural, therapeutic hemp oil with low-THC and high-CBD (CBD, or Cannabidiol, is a known anticonvulsant, reducing epileptic symptoms without the psychotropic effect). Before ingesting the oil, Charlotte had hundreds of seizures per week. Her seizures largely disappeared after she started taking it.
A groundbreaking CBD strain, known as Charlotte's Web, created by Stanley Brothers in Colorado Springs, is a whole plant Hemp extract that helped Charlotte with her condition, according to the Stanley Brothers' website.