SALT LAKE CITY — Parents of children with epilepsy celebrated on Friday as Utah Gov. Gary Herbert signed a bill that gives them access to cannabis oil.
Those families hope the oil can end their children’s seizures.
The governor’s signature comes at an emotional time. House Bill 105, or Charlee’s Law, was named after 6-year-old Charlee Nelson, who died right after the legislation passed. Her funeral was Friday.
She suffered years of seizures due to Batten Disease and was laid to rest in Holladay. Cannabis oil wouldn’t have saved her but could have improved her quality of life, or even prolonged it.
Herbert signed a bill granting parents access to CBD oil the night before Charlee’s funeral. The bill’s sponsor was at the private signing event.
“The governor was very emotional, as well as members of the family,” said Rep. Gage Froerer. “I think it was very important for them to have closure of this prior to the funeral.”
The new law takes effect July 1.
“A weight has been lifted to know this is reality now,” April Sintz said.
With their doctor’s permission, April and Kyle Sintz can get cannabis oil from states like Colorado. It’s a non-psychoactive extract they can legally possess in Utah without fear of prosecution. It’s for their 7-year-old son Isaac, who suffers from Dravet Syndrome. The family hopes cannabis oil will end his seizures.
About 55 Utah families are on a waiting list for CBD oil in Colorado. With this new law, they’ll go through a program and have access by fall, maybe sooner.
“We’re just overjoyed and thrilled that we finally get to try this but not only that we got to witness history being made,” Sintz said. “We didn’t just witness it, we got to be a part of it.”
Similar legislation just failed in Georgia. Utah is the first state in the country to pass a law like this.
“It’s a huge accomplishment, and it’s amazing Utah did it,” said Jennifer May, who leads the advocacy group, Hope 4 Children with Epilepsy
For May, whose son also has Dravet Syndrome, the new law means she doesn’t have to temporarily move to Colorado, like David and Mandi Cromar, who uprooted their lives to help their epileptic son.
Now, these families have a new option and when Jennifer May heard the news: “tears of joy, tears of shock, tears of appreciation that people understand where we’re coming from,” she said.
In a statement from Governor Herbert Friday, he said: “Cannabis oils show promise of offering some relief to Utahns suffering from seizures and epilepsy and we should do all we can to help them. My concern has been that the products are produced properly and that we have the adequate protections in place. Ultimately, I am satisfied the bill provides for that and I decided to sign it.”
Herbert will host a public signing ceremony Tuesday afternoon with many of those parents and their children who fought for months for this legislation.