Just about every four months, Wiltonian Ella Wright has a life-threatening seizure. Sometimes she seizes for such a long period of time her body begins to suffer from total organ failure.
The seizures spread like wildfire in her brain, her mother, Dana Haddox-Wright, said. The longer they are allowed to continue, the worse they become, and while most children have a “five-minute window” for medical intervention, Haddox-Wright knows her daughter more quickly succumbs than others.
It might not prevent seizures in such an acute situation, but there is a medicine in the United States that may reduce these seizures in children by up to 50%. But Haddox-Wright and many other supporters have had to fight an uphill battle to make it legal.
Low-THC marijuana, a non-addictive drug with very low concentrations of psycho-active substances, has reportedly helped children battling seizure disorder across the country, but is still illegal for use by children in Connecticut.
Connecticut House Bill 5892, “An Act Concerning the Palliative Use of Marijuana for Children,” seeks to change that. It would allow children like Ella access to medical marijuana.
Haddox-Wright gave testimony in support of the bill, which was sponsored by state Rep. Kevin Ryan (D-139).
“There’s a lot of misinformation about marijuana out there,” Haddox-Wright said during an interview last week. “And the word marijuana itself carries a negative connotation. But there is not a single documented case of someone dying from marijuana overdose.
“If someone stole a lot of medical marijuana plants [used to treat childhood seizures], it would take a lot to get high. The specific type of cannabis we’re looking for, for Ella, there is as much as 0.3% of THC, which is a very small amount. It would be a waste to use it to try and get high.”
Medical marijuana currently for sale in Connecticut has THC levels from 6% to 27%, according to information from D&B Wellness, a dispensary in Bethel.
The kind of marijuana Haddox-Wright and the Connecticut Association of Prevention Practitioners (CAPP) support for children is a pure CBD oil.
“CBDs are a non-psychoactive cannabinoid found in marijuana, and some case studies have shown CBDs may be an effective treatment for seizure disorders,” John Daviau of the CAPP said in written testimony.
Ella is a 5-year-old girl with a big smile who quickly warms to strangers. Her seizures are the result of a rare genetic disorder known as Dravet syndrome. As much as she loves to go outside, Ella can play for only 15 minutes at a time before she risks falling into a seizure.
Marijuana, especially the low-THC variety, is not a narcotic like the benzodiazaprines Ella already takes, and it carries very little chance for addiction.
In addition, there is growing research into its effectiveness in treating seizures, including a recent report from the American Academy of Neurology (AAN).
For 137 people who completed a 12-week study by AAN on the effectiveness of medical marijuana, patients experienced 54% fewer seizures while taking the drug and only 12 people stopped taking the drug due to negative side effects.