Charlotte Figi had her first seizure when she was just a couple months old. By the time she was three, she was having up to 300 grand mal seizures a week. Charlotte eventually lost the ability to walk, talk and eat. Her parents desperate for a cure found the Stanley brothers in Colorado who thought they might be able to help.
They were working on a strain of marijuana low in THC, the compound that makes it psychoactive, and high in CBD.
The first time Charlotte was given the cannabis oil her seizures stopped for seven days and now she can walk, talk and feed herself.
Isaac Sintz is a seven year old boy from pleasant grove. He has Dravet Syndrome, the same type of epilepsy Charlotte has.
Isaac’s mother April Sintz told ABC 4 Utah, "It's a progressive disease, so uncontrollable seizures are a symptom of the disease. So he will have uncontrollable seizures for the rest of his life."
While he looks like an active little boy, Isaac’s brain is always seizing. Even with medication he has any where from 5-30 grand mal seizures a week.
"Every morning we don't know if a seizure will take his life,” said Sintz.
When Sintz and the local group “Hope 4 Children with Epilepsy” heard Charlotte's story they knew they had to find a way to get this miracle cannabis oil to Utah.
Sintz said, "You think ‘oh my goodness, okay we've got to try this no matter what it takes, even if it takes changing the state law we're going to try this.’"
That's exactly what they've done. With the help of Representative Gage Froerer they're working on a bill to get the oil, that they've named Alepsia, here to Utah.
Rep. Froerer told ABC 4 Utah, "If you look at the medical research and take the time to investigate what it really is, you're really talking about CBD extract vs. Marijuana extract."
The oil has less than .03% THC. It has less THC than you can find in hemp oil at the grocery store and it's much safer than Isaac’s other options.
Sintz said, "If my baby were to get one of the pills he's taking it could cause cardiac arrest and we'd be in the emergency room, but if my baby got the entire bottle of Alepsia and take it he'd be just fine."
They're hoping to have a bill by January 1st, but even then it will take 3 to 6 months to produce the oil and between now and then Isaac, and other kids like him, will suffer hundreds of seizures.
For more information: