A growing number of families across the country are packing up and moving to Colorado seeking help from medical cannabis therapies for children suffering from severe disabilities.
Cincinnati.com tells the story of one such family, the Bentons of Liberty Township, Ohio, who are preparing to leave their home in order to get help for their their two-year-old daughter Addyson who suffers hundreds of seizures a day.
Addyson Benton was 8-months-old when she had her first seizure. By 14 months, she had been diagnosed with myoclonic epilepsy, a potentially fatal condition should her seizures become uncontrollable. Her latest prescription, Depakote, carries the risk of liver failure.
“She has bite marks all up and down her arms,” said Addyson’s mother Heather Benton. “We think she’s weaning from Onfi, her last medication that didn’t work.”
In December, Addyson’s father, Adam Benton, officially became a resident of Colorado, one of only 20 states where medical cannabis is legal.
Addyson is currently on a waiting list for a strain of marijuana grown there known as Charlotte’s Web, named after a 7-year-old who, when dosed with the cannabis strain in an oil form, saw her seizures dramatically reduced.
The Bentons plan to leave behind their friends and family to move to Colorado as soon as Addyson comes off the waiting list, which they hope will be October.
“It’s so sad to know that Addyson won’t be able to see her family because there is just such a lack of understanding about medical marijuana in our government here,” explained Heather Benton. “Not one part of me is afraid to give Addyson medical marijuana, but I’m terrified to keep giving her the medications she’s been prescribed, that haven’t worked, and have all these horrible side effects.”
The federal government lists marijuana as a Schedule I drug, grouping it with the “most dangerous” substances, including heroin, LSD and methamphetamine.
That classification places enormous restrictions on scientists, medical experts and pharmaceutical companies making in-depth research and clinical trials on the drug “nearly impossible,” says Dr. Amy Brooks-Kayal, vice president of the American Epilepsy Society, which supports medical cannabis research.
“We have a great need for new therapies in epilepsy, but the challenge (with medical marijuana) is that all we have is anecdotal evidence,” said Brooks-Kayal, a Colorado-based neurologist.
Dr. Judith Feinberg, associate chair for the Department of Internal Medicine at the University of Cincinnati’s College of Medicine explained that legalizing marijuana in states where it is banned would not necessarily translate into new research for cannabis-based ground-breaking drugs. Approval for new drugs by the FDA requires the interest of pharmaceutical firms, committed to spending big on research for drugs that will return them a profit.
“Even now that it’s legal in a number of states, there doesn’t seem to be a drug company that sees it’s worthwhile,” she said. “There doesn’t seem to be enough profit margin in it for them.”
In the meantime, families like the Bentons will be forced to uproot their lives, leaving behind their homes and family support systems, seeking the therapies that their children require.
Watch the video below from Cincinnati. com: