ROANOKE RAPIDS — Watching her child suffer from seizures has caused Halifax resident Dia Denton to become a mom with a mission.
She said she is working to see medical marijuana legalized in North Carolina and she won’t stop until it happens.
Fifteen months ago, Denton, her husband Jeff and son Noah welcomed Nicholas, the newest member of their family into the world.
Shortly after, Denton noticed something wasn’t right. He was having spasms, or seizures — five to six at a time.
After numerous tests, Nicholas was diagnosed with West Syndrome, also called infantile spasms.
Denton said this is a catastrophic form of epilepsy, which is a group of long-term neurological disorders characterized by epileptic seizures.
“His prognosis is generally poor,” she said. “He’s not expected to have a good quality of life. This comes with severe mental and physical disabilities. This has a fairly high death rate if it’s not controlled.”
Denton said doctors have experimented with six medications since Nicholas’ diagnosis. Currently, he’s on three, but the seizures have not stopped, according to Denton, who added presently her son is not developing as other children.
“The only thing he can do right now is roll over,” she said, adding Nicholas will soon have to leave day care. “He’s 31 inches long and he can’t sit up or play on the floor. I don’t know what we’re going to do. We have to get him better.”
Denton said with the help of her family they’ve found evidence that medical marijuana may be the answer they are looking for. She cited a 2013 report by CNN correspondent Saundra Young, which covered the benefits of medical marijuana in children suffering from epilepsy. According to that report, Charlotte Figi was 3 months old when she had her first seizure. As she grew the frequency and duration of the seizures grew with her.
Charlotte was hospitalized repeatedly and later diagnosed with Dravet Syndrome, also known as myoclonic epilepsy of infancy.
She was put on heavy duty medications including barbiturates and benzpdiazepines. The report said the seizures would go away for a while then resurface. When she was 2, Charlotte began to deteriorate cognitively, according to her parents in the CNN story.
In November 2000, Amendment 20, requiring a state run marijuana registry program, was approved by voters in Colorado.
Charlotte’s family found evidence a strain of cannabis, low in tetrahydrocannabinol, or THC, and high in cannabidiol, or CBD, was being used to treat Drevet Syndrome in California with positive results, according to CNN.
The strain of cannabis was high in medicinal value but did not have the unwanted side psychoactive effects.
After years of struggle, watching their daughter digress to the point she could not walk, talk or eat, Charlotte’s parents had their daughter put on the registry. Instead of smoking the marijuana, the leaves were compressed, the oil was extracted and placed in Charlotte’s food twice a day. The medicine was named after Charlotte — “Charlotte’s Web.”
The results were reportedly spectacular, with diminished seizures. Over time, Charlotte regained her ability to walk and talk, according to the CNN story, which can be found at http://cnn.it/1gHTtDl.
Denton said she wants to give that option to her son. She said she can’t however because it is illegal in North Carolina, and marijuana is a Federally controlled substance so it is impossible for her to buy the medical marijuana in another state and transport it to North Carolina.
“I can’t say if we gave it to him it would help,” Denton said. “But why would any parent not want to try to give him some quality of life? It can’t possibly be worse than what he’s currently taking: Phenobarbital. I can smell the alcohol when I give it to him. It’s 13 percent alcohol. It’s more than a beer.”
Denton said there is currently a lot of good momentum on the possibility of a medical marijuana registry in North Carolina. She said she has talked to Rep. Michael Wray, D- Gaston; and Sen. Angela Bryant, D- Rocky Mount, and she discovered from another source there is the possibility a bill will be introduced in the legislature from Mecklinburg County in May when they go back into session.
Denton said she hopes everyone will help her have the opportunity to try to make life better for her little boy by contacting their legislators and telling them to support a medical marijuana registry in North Carolina.
Denton, who is Halifax County assistant county manager, said while her work family is personally supportive, she wants to be clear the County is not involved or taking a position on this issue.
She added her appreciation for husband and other son Noah for their help.
“Jeff is my rock,” she said. “And I’m his. There’s nobody I’d rather go through this with than him.”
She said she and her family are determined to help their son build a good life.
“This needs to be an option for these kids,” Denton said. “They’re either going to die or have no quality of life. I’m a mom on a mission. This is a Nicholas thing!”