@NCCapitol

@NCCapitol

Lawmaker seeks to legalize marijuana oil for NC children with severe epilepsy

Posted March 10, 2014 6:30 p.m. EDT
Updated March 14, 2014 9:35 p.m. EDT

— A state lawmaker is coming to the aid of North Carolina families desperate for help because their children suffer debilitating seizures.

Rep. Pat McElraft, R-Carteret, said she plans to file a bill that would legalize an oil extracted from a specific strain of marijuana, which parents and others have said has shown promise in children with Dravet Syndrome.

"We've got to do this for them. It's the only hope they have," McElraft said as she choked back tears.

Five-year-old Zora Carlin has Dravey Syndrome and has suffered up to 40 seizures a day since she was an infant. Her parents tried 14 different medications, various diets, vitamins and supplements to treat the condition without success.

"She's happy – (we're) reading with her or something – and the next minute, you know, she's on the floor, and she's into a full-blown seizure, turning blue," said her father, Steve Carlin. "Her quality of life is not advancing. She takes two steps forward and has a seizure, and takes five steps back. So, she's not advancing anywhere."

Other families have moved to Colorado to take advantage of Realm Oil, which is made from a strain of marijuana called Charlotte's Web. The oil is illegal in North Carolina.

Charlotte's Web has extremely low levels of tetrahydrocannabinol, or THC, the psychoactive ingredient in marijuana, but has extraordinarily high levels of CBD, or cannabidiol, a non-psychoactive component that research shows has a growing number of therapeutic benefits.

"We've got to find a way to allow our North Carolina children to be able to take this," McElraft said. "I can't even imagine having to sit there as a parent having to watch (multiple daily seizures)."

Dr. Yael Shiloh-Malawsky, a pediatric neurologist at UNC Hospitals in Chapel Hill, says CBD oil is not approved by the U.S. Food and Drug Administration. However, for someone like Zora, it’s worth giving the medication a try before it is approved, given the severity of her disorder.

Without some kind of improvement, she says, Zora is at a higher risk for Sudden Unexplained Death in Epilepsy.

State lawmakers last year defeated a bill that would have legalized medical marijuana in North Carolina. McElraft said her bill, to be called "Hope for Haley" after a child in her district, will be different.

"It's not going to be about legalizing medical marijuana for adults. This is only about CBD oil for the children," she said, adding that she will write the bill to preclude prescriptions for adults.

Without a new law legalizing the marijuana oil in North Carolina, Carlin said he worries how long his daughter can survive.

"I'm feeling very excited, but I still know we have a lot of challenges," he said.