Charly Curtis died after her parents couldn’t get cannabis oil—now her family is fighting for legalization.
“It can help so much, that to just sit and keep our story to ourselves is—for me, it’s not an option,” her mother Heidi Curtis explained. “Because there are other kids out there that need it.”
Six-year-old Charly had been on multiple medications to treat a form of epilepsy called Lennox-Gastout syndrome (LGS), which inflicted her with multiple types of seizures. She died in her sleep after an intense seizure in February 2019.
Her parents tried various prescriptions and remedies, but found that a mix of THC and CBD was stopping Charly’s seizures, so they acquired a bottle with equal parts of each.
Since medical cannabis is illegal in the family’s home state of Indiana, they got their doctor to prescribe Epidiolex, the only form of CBD approved by the Food & Drug Administration (FDA) for controlling seizures in people with two forms of child-onset epilepsy. Epidiolex is a specialty drug with a waitlist and delayed approvals, and the Curtises were initially told they’d have to wait three weeks—a time that then became extended after the doctor’s office forgot to get their signature on a form.
The Curtises realized they were going to run out of cannabis oil, so they called around to people they knew in surrounding legal states. David Curtis left for Colorado the afternoon of February 6, to pick up some more of the 1:1 oil, but as he was arriving the next morning, his wife called him with the tragic news.
Curtis wasn’t always in support of cannabis, but now she’s fighting for legalization in Indiana so no other parents have to go through what she and her family have.