6-year-old Charly Curtis died because her parents couldn’t legally get the medical cannabis she needed — and then they were treated like criminals for trying to save her life.
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‘It can help so much, that to just sit and keep our story to ourselves is just—for me, it’s not an option. Because there are other kids out there that need it. Not just Charly.’
6-year-old Charly Curtis, who had autism, had been on multiple medications to treat a form of epilepsy called Lennox-Gastout Syndrome (LGS), which is characterized by multiple seizure types. Charly died in her sleep after an intense seizure in February 2019.
‘And once she had the first one, they just kinda kept coming and kept coming.’ Heidi Curtis, Charly’s mother
But in January 2019, her father David Curtis traveled from their home in Indiana to Colorado and brought home a weed brownie to treat Charly’s seizures.
‘She was different that evening. It was like an immediate change. Happier, more talkative, you know, her communication was better. She was more focused. So, Saturday we did the same thing — gave her a little bit in the morning, little bit in the afternoon, ‘cause that’s when she takes all of her other medications. And made it through the entire day with no seizures. She had not made it through an entire day of no seizures since January. She’d have at least one every day. Some days she’d gotten up to 3 or 4 of ‘em at a time.’
Curtis wasn’t sure whether the THC or prescribed medication that stopped Charly’s seizures.
‘On Monday, we decided to hold [the THC] back, not give it to her, because, you know, we were wondering, is the Onfi finally working, or is it the THC working? So we didn’t give her any of the THC that morning, we just gave her her other medications, including the Onfi, and sent her to [Applied Behavior Analysis] school. She didn’t even make it to lunch with—you know, she had 2 seizures before lunch.’
The Curtises found the THC was stopping Charly’s seizures, so they acquired a bottle of 1:1 (THC:CBD) cannabis oil and began giving it to Charly.
‘So we started the oil the next morning, and again, she was great. Sent her to school, no problems. Picked her up from school, gave it to her, no problems. We gave it to her every single day. She started having a few small, breakthrough seizures, but they weren’t as intense as the ones prior to giving her the THC. So, we go back to the neurologist on February 1, and David’s telling him, you know, I’m giving her THC, the Onfi’s not working. So the doctor pulls her off the Onfi and writes a prescription for Epidiolex.’
Epidiolex is the only form of CBD approved by the Food & Drug Administration (FDA) for controlling seizures in people with 2 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 3 weeks.
‘We get a call from the neurologist on February 5. Somebody had dropped the ball in their office and they still needed a signature from us, so the prescription hadn’t even left their office at that point. It still needed to be sent to Epidiolex, who would figure out the dosing, and then Epidiolex would send it to the specialty pharmacy. It was frustrating, because we’re like, ok, we’re still at square one. You know, we went to the doctor 5 days ago and things should have been sent already. Nothing had been sent, so we’re like, ok, we’ve still got a couple weeks. What are we gonna do?’
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 that was working for Charly. As David was arriving in Colorado the next morning, his wife called him and told him that their worst nightmare had come true.
#Cannabis #MedicalMarijuana #Weed #Health
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