Charlotte Figi curled up in her parent's arms

Article updated April 8, 2020.

Charlotte Figi, a girl with a rare form of epilepsy called Dravet syndrome and who helped normalize CBD use for chronic health conditions, died at the age of 13, according to the Realm of Caring Foundation, on Tuesday. She died from likely complications due to COVID-19, according to the Colorado Sun.

This is Nichole writing to update you for Paige, Greg and Matt. 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. Posted by Paige Figi on Tuesday, April 7, 2020

Figi was born with Dravet syndrome, a rare form of epilepsy that develops in the first year of life. It causes repeated seizures and typically doesn’t respond to existing epilepsy medications. Dravet syndrome can lead to other complications, including developmental disabilities. Figi’s parents shared she could have as many as two seizures an hour at its worst Figi was nearly out of treatment options when her father saw another child with Dravet syndrome responded to CBD.

Related:​ COVID-19 Is Leading a Long Overdue Attitude Adjustment Toward Those With Chronic Illness

CBD, or cannabidiol, is a non-psychoactive strain of the cannabis plant that has shown promise for a number of chronic illnesses, including epilepsy, chronic pain and cancer, though additional research is needed. In 2012, the Figi family worked with the Stanley brothers, who own several Colorado dispensaries, to compound CBD products for Figi that didn’t include THC, the strain of cannabis that can get you “high.” The Stanley brothers created a line of products called Charlotte’s Web, which remains one of the most popular brands of CBD products.

Figi’s journey with medical cannabis ushered in a movement that helped destigmatize cannabis products and made them more widely available. Figi was featured on a CNN special in 2013, showing how CBD dramatically helped ease Figi’s seizures. Her story helped usher in widespread acceptance for CBD: 47 U.S. states now allow medical marijuana and CBD derived from hemp is legal nationwide. In 2018, the Food and Drug Administration (FDA) approved the CBD-based drug Epidiolex to treat Dravet syndrome.

Story continues

Related:​ How 'Yes, and' Thinking Is Helping Me Fight Depression During COVID-19

It is with a heavy heart that we write to let you know that Charlotte Figi passed away this afternoon. Charlotte's story… Posted by Realm of Caring on Wednesday, April 8, 2020

According to Figi’s mom, Paige, the whole family had COVID-19 symptoms but were initially unable to get tested. Once admitted to the hospital, Charlotte tested negative, but she was still treated as a COVID-19 patient because of her symptoms. She died following a seizure that led to respiratory failure and cardiac arrest. The U.S. currently has nearly 350,000 reported infections from the SARS-CoV-2 virus, and 12,000 deaths.

“Charlotte was ten feet tall and carried the world on her shoulders,” wrote Charlotte’s Web on its website, adding:

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.

Related:​ Helping Kids Cope With Uncertainty During the Coronavirus Pandemic

Fans and friends reacted to her death on social media and shared condolences.

Charlotte, you are the light of our lives. In loving memory of Charlotte Figi. Thank you for your life, your bravery and your beautiful soul. pic.twitter.com/x7JPFsXDQv — Charlotte's Web (@charlottesweb) April 8, 2020

Our hearts are breaking from the sad news that Charlotte Figi has passed away. She was the namesake for an early varietal of low-THC, high-CBD medical cannabis. 1/2 pic.twitter.com/siD71zwEpY — epilepsyfdn (@EpilepsyFdn) April 8, 2020

Heartbroken by today’s news that Charlotte Figi of Charlotte’s Web passed. I had the honor to write about her a few months ago for High Times. Beautiful family. Rest in power Charlotte and thank you for all you gave the cannabis world ❤️ pic.twitter.com/AQvxaRKX1G — Sophie Saint Thomas (@TheBowieCat) April 8, 2020

Our hearts are breaking for the family of Charlotte Figi as well. We send our deepest condolences to them at this difficult time. ???? https://t.co/fVkkngoik9 — EPIC LI (@EPICLongIsland) April 8, 2020

Today we celebrate the life of one brave little girl, Charlotte Figi, who sadly passed away from coronavirus.

She showed the whole world the true power of the plant that helped her heal. Our love and deepest respects to her family and friends. #Charlottesweb ???? pic.twitter.com/d0JKy1dHIg — PlantEd Collective (@PlantEd_Coll) April 8, 2020

Our thoughts go out to the family of Charlotte Figi. This little lady opened the worlds eyes to the benefits of cannabis, changing perceptions globally. Thank you for your strength and the incredible impact that you’ve had. You will forever be remembered as a #cannabiswarrior ???? pic.twitter.com/hW3NqivZqy — United Patients Alliance (@UPAllianceuk) April 8, 2020

Very sad to hear #CharlotteFigi has passed away due to complications related to #COVID19. Charlotte, who had Dravet syndrome, launched a movement that led to sweeping changes in #cannabis laws across the globe. Our heart goes out to her family & friends.https://t.co/sU5ZFRE1A5 — The Centre for Medicinal Cannabis (@C4MC_UK) April 8, 2020

This is simply heartbreaking. Charlotte Figi was the face of this movement. My heart goes out to her wonderful family. https://t.co/7X5ucC9p2T — Mary Ellen Klas (@MaryEllenKlas) April 8, 2020

Charlotte was an absolute inspiration to children, families, and academics alike in the #epilepsy community and beyond. We were heartbroken to learn about her passing due to complications related to COVID-19. https://t.co/qtKNn2Orga — CURE Epilepsy (@CureEpilepsy) April 8, 2020

RIP Charlotte Figi it was an honor to have known you and your amazing @charlottesweb family, you changed the world, be free! ????✊????⚜️ pic.twitter.com/MagdJJ53zM — KT (@KyleTurley) April 8, 2020

RIP, Charlotte! You inspired a radical change in this country.https://t.co/4aOgwMuenN — Alan Brochstein, CFA (@Invest420) April 8, 2020

Read more stories like this on The Mighty:

11 Tips to Ensure an Enjoyable Easter During COVID-19 Isolation

I Can't Stop Thinking in Worst-Case Scenarios About the COVID-19 Pandemic

What It's Like to Be Food Insecure During the COVID-19 Pandemic