Legislation fails to pass: Time runs out for kids’ use of medical marijuana

When the Connecticut General Assembly regular session ended on June 3, chances for passage of a bill that would enable children to benefit from the use of medical marijuana apparently ended with it.
A spokesman for Rep. William Tong (D-147), who is co-chair of the Judiciary Committee that introduced the bill, said the “call” for the special session does not include it. He did say he expected it to be brought up again in the 2016 session.
This has come as a blow to the many families in Connecticut whose children suffer from seizure disorders and other medical conditions. They believe the symptoms their children suffer can be eased by an oil from the cannabis plant that does not have hallucinogenic properties.
When the legislative session ended, a group of mothers turned to social media to spread the word and exert pressure on legislators. Dana Haddox-Wright of Wilton, Cara Johnson-Tarricone of North Windham and Joy O’Meara and Ashley Veronica of Trumbull started a Facebook page called Help Pass Senate Bill 1064 in CT. They all have children who have uncontrolled seizures.
Just a few days after being posted, the page had more than 600 likes and has become a virtual message board for families to tell their stories.
“We’re just trying to get more attention, to get it out there more,” Haddox-Wright said. Her five-year-old daughter, Ella, suffers from Dravet syndrome, which causes severe seizures.
“We think a lot of people don’t know about it or don’t understand. … This is definitely an issue that’s very important. It could give a lot of families relief and save lives.”
One of the problems, as Haddox-Wright sees it, is the perception people have of marijuana. These families are not looking to have their children smoke or otherwise ingest marijuana. They are hoping to use an oil derived from the cannabis plant called CBD oil that contains almost no THC, the hallucinogenic property of marijuana. To date, 14 states have legalized CBD oil for children: Alabama, Florida, Georgia, Iowa, Kentucky, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Utah, and Wisconsin.
When Florida Gov. Rick Scott signed the law, known as Charlotte’s Web, in his state last year he said, “As a father and grandfather, you never want to see kids suffer. The approval of Charlotte’s Web will ensure that children in Florida who suffer from seizures and other debilitating illnesses will have the medication needed to improve their quality of life. I am proud to stand today with families who deserve the ability to provide their children with the best treatment available.”

Giving a voice

In addition to the negative outlook some have toward marijuana, Haddox-Wright said supporters were not unified.
“Parents are homebound because they are the caretakers of their children,” she said. Facebook makes it easy for someone home all the time to find support.
“We’re finding that when people find our page they’re so thankful because they don’t have a voice.”
Those contributing stories to the Facebook page are speaking loud and clear.
There is the story of Henry, a six-year-old who has been battling seizures since he was 2. “He also suffers from behavior, cognitive and memory issues resulting from the seizures and/or meds,” his mother wrote. They have tried 13 different medications — as many as five at a time — and special diets to control his seizures, all without success. He now faces surgery.
Jamison was fine until he was about 17 months old. That is when the seizures started. Now 6, he suffers from seizures daily, his mother said. “My son is the strongest little fighter and no matter what he always finds a way to smile,” she wrote. “Please imagine it was your child that needed this.”
Seven-month-old Reagan was only four months old when she developed epilepsy, and at first suffered from more than 500 seizures a day. Medication has damaged the speech center in her brain causing her to be non-verbal, and others affect her body’s ability to regulate temperature, making it dangerous for her to be outside when it is hot.
“Reagan is tube fed, has global delays, and still has 30 to 100 seizures daily, yet manages to smile through it all,” her post reads. “Reagan and so many other kids need the chance to try medical marijuana, a treatment with no damaging side effects that could make a world of difference.”