The young Colorado Springs girl who suffered from a rare form of epilepsy called Dravet syndrome has died at the age of 13. She was initally believed to have had COVID-19 in early April and was treated as such. However, her death was a result of a seizure
The family Facebook page broke the news and clarified conflicting rumors about the cause of her death.
The medical marijuana movement began with her and her story helped change minds across the country. Millions benefited from access to alternative medicine. A strain of medical marijuana oil was named Charlotte’s Web in her honor.
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.
Charlotte had Dravet syndrome, an extreme form of epilepsy. At age 5, she suffered as many as 300 grand mal seizures a week, used a wheelchair, went into repeated cardiac arrest and could barely speak.
Her mother, Paige Figi, began calling medical marijuana shops in Colorado after doctors had exhausted all other options. Charlotte's symptoms largely disappeared after she began taking an oil infused with a strain of cannabis low in THC, the plant's psychoactive ingredient, but high in the compound cannabidiol, or CBD.
The oil's name, inspired by her story, was changed to Charlotte's Web.
Charlotte's success led other families with children suffering from seizures to move to Colorado, where marijuana was legalized much earlier than other states.
In a Facebook post last week, Paige Figi announced that Charlotte was in the hospital because of a virus.
“Most of the house recovered well from a month of virus but our little Charlotte hasn’t improved,” the post read. “She had a couple days where she seemed to turn the corner but then she took a dive. We used all of our tricks the past few days but nothing worked.”
When Charlotte was born, only a handful of states permitted the use of marijuana for medical purposes. Now in 2020, only three states maintain complete bans—Idaho, South Dakota, and Nebraska. And there's a ballot initiative in Nebraska for consideration in November to amend the state's constitution to permit it.
Paige Figi founded the nonprofit Coalition for Access Now, which works to educate Americans about the value of marijuana and CBD oils as a potential treatment for health problems and advocates for changes in the law to allow for legal consumption.
While legal changes are still a fight, especially on the federal level, it's safe to say that the Figi family and Charlotte have succeeded wildly in helping change Americans' view of the value of CBD oils. Now, CBD goods have become trendy—maybe a little too trendy, given those who want to attempt to treat it as a miracle cure for just about anything. The Food and Drug Administration is sending out letters warning CBD companies to stop telling people that their products will protect users from COVID-19. And state governments persist in meddling unnecessarily in the use of CBD in foods and beverages.
It's a tragedy that Charlotte didn't make it to adulthood to fully appreciate how much the Figi family's hard work has helped change the landscape for marijuana policy. More children in Charlotte's situation now have easier access to treatments that can ease their suffering. More research is happening, too, to determine what cannabis can actually do as medicine.
America is a different place now—and a much, much better one when it comes to drug policy—because of the pivotal role played by Charlotte Figi and her family.
Charlotte's fight to control her seizures became a national story when the family reported that treating Charlotte with cannabidiol oil, more commonly known as CBD, dramatically reduced her seizures. Paige connected Charlotte with medical marijuana producers in Colorado, run by the Stanley brothers, and they developed a strain of cannabis with high levels of CBD, which they made into an oil. That medical marijuana dispensary subsequently named their strain (and later, their whole company) Charlotte's Web after her.