Our community is mourning the loss of a special little girl, Charlotte Figi, who had
Dravet syndrome and became the face of CBD and the cannabis legalization movement. She touched so many lives in her 13 short years, changed so many minds, and empowered her mom, Paige Figi, to move such enormous mountains that it feels like every one of us has lost a piece of our hearts. She, like some before her, was a well-known member of our community, and that makes the loss ripple through our parents even more than the weekly losses our community suffers, none of which is any less heartbreaking.
To most of our community, she was a warrior, the Face of Cannabis, a symbol of hope, and a trailblazer. And she was. She struggled, she suffered, she overcame, she learned, she changed minds, and she laughed.
But to me, she was more than a symbol. She was the sweetest little girl with an adorable belly laugh who loved her mama, adored her twin sister Chase, followed her big brother Max, and giggled with her dad. I’m mourning the loss of a little girl and the hole she leaves behind for her family and friends.
Charlotte was just three years old when we first met her. Even then, she and her mom taught us how to soldier through this crazy world. Paige was the inspiration for the hiking backpacks that allowed us to seek the roads less traveled here in Colorado. Charlotte had Paige wrapped around her little finger in the most beautiful way: Keto, g-tube hydration, art therapy, the search for solutions to clusters of seizures that plagued both her and Aiden. Seizures were plentiful then – Charlotte’s and Aiden’s – and it was the first time either of us had seen another child with Dravet seize. There’s comfort in numbers, they say. I suppose there was.
In the darkest moments, when we couldn’t fathom our children suffering more, plagued by seizures every 10 minutes for days on end, they would reach out a warm little hand and let us know they were still there. We searched for solutions together, often in the middle of the night while they were both clustering, and although what helped Charlie didn’t help Aiden and what helped Aiden didn’t help Charlotte, it was always about the two of them. Not the solutions themselves. Charlotte wasn’t the Face of Cannabis to me: She was my friend’s daughter. Aiden’s partner in crime. Paige’s buddy. Max and Chase’s sister. Matt’s little girl. She was the small imp who kept a shiv with her for comfort, who shrieked and stomped in the kiddie pool (then seized on my kitchen floor from excitement), and who shoveled dairy-free guacamole into her mouth like no one’s business.
It’s been a few years since I’ve seen Charlotte. She seemed happy and healthy in pictures. The family seemed happy and healthy. I imagine they’ve grown and shifted, just like ours. They are going through the unimaginable now and I grieve for Paige, for Chase, for Max, for Matt, and for Greg. The loss they are suffering is not the loss the rest of us are, and for that I am truly, truly sorry. From the bottom of my heart.
On behalf of DSF and everyone in the Dravet syndrome community: We will always remember Charlotte and the web she wove. We are grateful for her contribution and spirit.
From Andy, Owen, Alec, Aiden, and me to Paige, Chase, Max, Matt, and Greg: You are in our hearts, our thoughts, our prayers. We will never forget Charlotte, your little girl.