One of the cannabis industry’s littlest advocates died this week — and she’s being mourned all over the world, including the Okanagan.
Charlotte Figi, 13, is the namesake for the high-CBD, low-THC strain Charlotte’s Web.
Early on in her short life, she became known as “the girl who is changing medical marijuana laws.” At three months old, Charlotte began suffering seizures from Dravet Syndrome, a severe and difficult to control type of epilepsy that causes prolonged seizures.
Charlotte’s Web was created to help ease her symptoms. After taking the cannabis oil, she suffered only a handful of seizures a month.
Her story was inspirational for many, including the South Okanagan family of Kyla Williams, 8, who has also suffered from intractable seizures since she was three months old.
Speaking through tears, Kyla’s grandmother said the family has struggled with Charlotte’s death.
“The news has really hit us hard,” said Elaine Nuessler in an interview with The Okanagan Weekend. “It’s a little bit tough to talk about. She was such an inspiration for so many people. It’s just amazing how a little girl can open up minds.”
Charlotte’s household had been struggling with sickness since the beginning of March. Though their illness didn’t have all the characteristics of COVID-19, the family heeded advice to treat at home.
When the young teen’s symptoms worsened, Charlotte was admitted on April 3 to the pediatric intensive care unit at Children’s Hospital Colorado.
“She was treated on the COVID-19 designated floor using all of the medical protocols set in place,” said Charlotte’s family in a Facebook post.
Charlotte tested negative for COVID-19 and was discharged on April 5 after she seemed to improve. However, Charlotte had a seizure early on April 7 from which she didn’t recover.
“Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully,” said the family.
“Charlotte is no longer suffering. She is seizure-free forever.”
Here in the Okanagan, Kyla’s early childhood suffering bore similarities to those Charlotte had endured. Kyla spent time in Vancouver Children’s Hospital and underwent test after test, yet no explanation was uncovered and her symptoms worsened.
The family had heard that cannabis was being used in Colorado by many kids with epilepsy.
Nuessler and her husband Chris, a retired RCMP officer, were very much against cannabis in 2004, but they suddenly found themselves in a conundrum where they’d have to break the law to access cannabis to potentially help their granddaughter.
They decided it was worth it and went public with their struggle.
“People need to be woken up, and sometimes you have to do things you’re not comfortable with in the beginning,” said Nuessler.
The family managed to obtain cannabis oil for Kyla, and through its use, the seizures eased.
Charlotte’s story had been a catalyst for the Williams’ and Nuesslers, and the little girl’s death has brought grief.
“My heart bleeds for them because they’ve have worked so hard to give Charlotte and other kids some relief,” said Nuessler.
“Right from the very beginning that is what led us to search for relief for Kyla. That gave us hope because Kyla was so desperately ill and seizing non-stop. We were desperate to give her some relief. When you see that the world is so against it, you have to do your part to try to and help people figure that out; that it’s not what we were told to begin with. It’s life altering.”
They’ve since been advocating from their Okanagan home for research into medical cannabis for children through Kyla’s Quest. They also run Purple Hemp Co. in Summerland, where they help people along their medical cannabis journey.
Nuessler said she travelled to Colorado after the producers of Charlotte’s Web – The Stanley Brothers – contacted the family, prompted by national media coverage in 2004 of their determination to use cannabis oil to treat Kyla, even if it meant breaking the law.
They explored the production facility and met with members of Charlotte’s family, and have since kept in touch.
Charlotte’s death has pricked their own fears.
“We just had our moments, up and down — especially now that we’re dealing with Kyla having a few seizures. You know you walk this fine line,” said Nuessler. “That is a possibility for Kyla, too, to be taken by a massive seizure.”
While Charlotte tested negative for COVID-19, her sickness was initially treated as a potential case of the virus.
Nuessler said we all have a responsibility to protect the most vulnerable from the spread of the novel coronavirus.
“I see people every day not taking it seriously and it’s really concerning to me because it may not be them that has it, but they pass it on to a child like this and that’s the end of their life. Who wants to contribute to that? For the sake of all the elderly who are very susceptible and the children who are very sensitive and susceptible, for heaven’s sakes, follow the guidelines that are being put forward. They’re there for a reason.”