Heidi and Dave Curtis think medical cannabis could have saved their 6-year-old daughter Charly’s life. Now, they’re determined to make sure Indiana lawmakers hear Charly’s story and understand the life-or-death importance of safe, legal access to medical cannabis treatments.
Indiana Parents Risk Everything To Provide Daughter With Medical Cannabis
Indiana is among the minority of U.S. states without any form of legal cannabis, which means parents have to risk everything to provide their children with needed medicine. Indeed, Heidi and Dave Curtis did risk everything to treat their daughter Charly, who had epilepsy and autism, with THC. They risked jail time. They risked losing custody of Charly to Child Protective Services, which would have viewed their desperate action as neglect. But for the Curtis family, “all those risks were worth it if we could help her,” Heidi said.
And Charly’s parents were absolutely sure that medical cannabis, specifically THC oil, was helping their daughter. Diagnosed with autism and a severe form of childhood epilepsy called Lennox-Gastaut syndrome, Charly was prone to severe, long-lasting seizures. But because Lennox-Gastaut is a type of epilepsy that causes different types of seizures, traditional anti-seizure medications weren’t working.
So Heidi and Dave looked into the cannabis-based epilepsy drug Epidiolex. Epidiolex is a cannabidiol (CBD)-based drug and the first cannabis-based medication to receive FDA approval. But accessing the drug in prohibition Indiana proved difficult, and the Curtis’ had to wait through long delays just to get their hands on Epidiolex for Charly.
Tired of waiting on the approval process, Heidi and Dave decided to break the law for their daughter. That’s when they gave the 6-year-old Charly her first dose of THC. “We thought, ‘OK, it’s not legal here. But we have to do something’,” Heidi said.
After Losing Their 6-Year-Old Daughter to Epilepsy, Parents Push for Legalization in Indiana
Before giving Charly her first dose of THC, Heidi recalls seeing her daughter fading away. She was moving more slowly, her speech was deteriorating, and the severe, minutes-long seizures and muscle contractions were affecting her developmentally. So when a friend of the Curtis’ returned from Colorado with some THC-infused edibles—a brownie—Heidi pinched off a tiny bit and gave it to Charly.
“There were no more seizures that day,” Heidi said. “We gave her a pinch the next morning. No seizures—that entire Saturday.”
Heidi said Charly’s turnaround was remarkable. She was learning constantly, speaking full phrases; she was bouncy and happy. The THC didn’t just reduce the severity of Charly’s seizures, it also improved her behavior and mood. She was calmer, less frustrated. Thinking such improvement had to be a coincidence, Charly’s parents didn’t give her any THC on Monday. That day, she suffered two grand mal seizures before lunch.
So, Heidi and Dave reached out to another person who was able to supply them with THC oil from Colorado. Without any guidance about what to give Charly or how much, they started giving her 2 mg of THC oil each day. Heidi said Charly still had seizures, but that they were nowhere near as severe as before. At their next neurologist appointment, they let Charly’s doctor know about her THC treatments. “I believe the comment was, ‘You do what you gotta do,’” Heidi said.
It was settled, then. Dave Curtis would drive through the night to Colorado and return with THC oil for his daughter. Heartbreakingly, Dave was 45 minutes across the Colorado border when he received a life-changing call. Due to a series of catastrophic seizures that stopped her heart, Charly had passed away that same night.
Parents Believe Legal Medical Cannabis Could Have Saved Their Daughter
So far, all efforts to legalize medical marijuana in Indiana died in the first legislative session of 2019. But Heidi and Dave Curtis, and the state lawmakers who support their cause, aren’t giving up the fight. They’re determined to put pressure on lawmakers to change state law so children like Charly can quickly and easily access medical cannabis. But access is only part of what Dave and Heidi Curtis are demanding. They also want expert guidance from health professionals educated in the use of medical cannabis treatments.
“I honestly think that if we had given her a higher dose of THC, or even gave her a dose before bed that night, that it might have stopped it,” Heidi said. “It might have made a difference. But we had no guidance on how much of this to give her.”
To lend your voice and your support to the Curtis family, make sure you let your representatives know you demand legal cannabis now. Only constant public pressure can overcome the unfounded biases of lawmakers who remain steadfast in their opposition to legalizing safe and effective medicine. Use this link to look up your legislator, contact their office, and let them know where you stand. Let them know you demand action now.