Charlotte Figi

Charlotte Figi, 2006-2020. Photo courtesy of Paige Figi's Facebook page.

Thousands are mourning the passing of Charlotte Figi, a 13-year-old Colorado Springs girl whose battle with Dravet Syndrome changed the lives of countless children around the United States.

Charlotte died Tuesday after an illness that hospitalized her multiple times over two weeks. When coronavirus testing was finally obtained for her, it came back negative, but the virus is still suspected, according to a family friend.

"Some journeys are long and bland, and others are short and poignant and meant to revolutionize the world," Realm of Caring, a nonprofit co-founded by her mother, Paige, posted to its Facebook page Wednesday. The page initially stated that Charlotte died from complications of coronavirus, but later edited the post to remove the assertion.

The girl and her family gained national attention when a CBD oil called "Charlotte's Web" alleviated her severe seizures that started when she was just three months old.

A family friend wrote on her mom's Facebook page Tuesday night that "Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love. Please respect their privacy at this time."

As of Wednesday morning, the notice had generated more than 1,100 comments from friends and supporters mourning her loss. 

Charlotte's Web launched the industry of medical-grade CBD oil and her story and those like hers led to laws changing around medical cannabis nationwide.

In the beginning, Charlotte had seizures. Lots of them. At one point her family documented more than 300 grand mal seizures in one week, and a thousand in a month. Seven different expensive medications weren't helping.

But things began to change for the better in 2012. That's when Charlotte's dad, Matt, saw a video of a young boy with Dravet who was being treated with cannabis. Soon after, the family met the Stanley brothers, who were developing a high CBD/low THC form of cannabis, but according to Cannabis Business Times, they weren't sure what to do with it.

After meeting Charlotte, they had the answer.

According to the International Business Times, the Stanley brothers tried various crossbred strains of marijuana and industrial hemp, with Charlotte serving as the test case. Eventually, they found the right combo: her seizures went down from 300 a week to just two or three a month. By August of 2012 she was off of the epilepsy drugs; by 2015 she was free of the feeding tubes and able to eat and drink independently.

Her mom, Paige, told Westword in 2013 that Charlotte no longer exhibited autistic behavior or severe sleep disorders. "She can walk — she's not in her wheelchair at all — and she's talking. She couldn't talk before, and now she's talking. It's been a totally life-changing event, totally life-changing medicine."

A 2013 documentary, "Weed," which aired on CNN, bought more attention to Charlotte and Charlotte's Web . In a 2013 essay, the documentary's host, Dr. Sanjay Gupta, apologized for his opposition to marijuana.

"I didn't look hard enough, until now. I didn't look far enough. I didn't review papers from smaller labs in other countries doing some remarkable research, and I was too dismissive of the loud chorus of legitimate patients whose symptoms improved on cannabis," including Charlotte, whom he met while making the documentary.

From there, states began changing their laws around the use of CBD to treat a host of medical issues for children. As of 2019, marijuana is fully legal in 10 states and the District of Columbia. Medical marijuana is legal in 30 other states, and CBD oil alone is legal for medical purposes in six more. 

In 2018, the CBD oil industry took its biggest step: seeking FDA approval, which could allow doctors to prescribe it like any other medication. The Food and Drug Administration approved the prescribing of Epidiolex, a product of GW Pharmaceuticals of England, for treatment of seizures tied to Lennox-Gastaut syndrome and Dravet syndrome, in patients two years of age and older.

"This is the first FDA-approved drug that contains a purified drug substance derived from marijuana. It is also the first FDA approval of a drug for the treatment of patients with Dravet syndrome," the FDA said in making that announcement.

Colorado was already ready to allow the prescribing of Epidiolex when the FDA made its decision, thanks to a bill approved by the General Assembly. House Bill 1187 amended the definition of marijuana to exclude prescription drug products approved by the FDA and dispensed by a pharmacy. 

One of its sponsors is Rep. Lois Landgraf, a Colorado Springs Republican. In a statement to Colorado Politics, Landgraf said she'd heard of Charlotte's passing Wednesday morning.

"Charlotte was a phenomenal young lady who inspired a movement that changed Colorado and helped thousands of children suffering from severe seizures. While her loss will have a profound effect on people in our state, 'Charlotte's Web' will always be a reminder of the impact one person can have on the lives of so many. My deepest sympathies go to to her family."

And on Tuesday, the day Charlotte died, the Drug Enforcement Administration notified GW Pharmaceuticals that it no longer considers Epidiolex a controlled substance under the federal Controlled Substance Act. The change, effective immediately, means that while Epidiolex is still a prescription medication, doctors who prescribe it do not have to be in the DEA’s drug-monitoring program.

The Stanley brothers wrote in a blog Tuesday that "Charlotte was ten feet tall and carried the world on her shoulders...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."

They ended with "we love you, Charlie."

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