Parents of epiliptic children out of options...

Posted at 5:40 PM, Jan 26, 2016
and last updated 2016-01-27 16:19:36-05

Local families counting on the medical benefits of controversial CBD oil fear they've run out of options.

It's a parent's delight to see their kids playing and having fun. But Alexis Carey, Marley Stevens and Owen Watson play a little differently. They all suffer from intractable seizures and their medication isn't cutting it.

There is hope that cannabidiol oil, or CBD oil, could curb the seizures. The oil is extracted from hemp and contains little THC, the chemical that results in a high from smoking marijuana. Clare Carey, mother of Alexis, spent weeks in the Statehouse last year fighting for a positive defense in court to possess and use CBD oil.

Even though the oil can't cause a high it's currently classified as a schedule one drug.

"Unless they take cannabiol oil off the controlled substance list, we would be breaking the law," said Carey.

Because of the oil’s classification Clare and other parents with children suffering from seizures are scared to use it. They fear if caught they could go to jail, lose their medical benefits, or have the state take away their children.

For parents of these children, there are few alternative options. In 2015, the Legislature passed Clare’s bill, nicknamed Alexis’ Law. Governor otter vetoed the bill, citing concerns with law enforcement.

To mitigate his veto, he also opened up an expanded access program which offered the opportunity to use a similar product in a monitored situation. The problem is, these kids don't qualify.

"Of all the people advocating there's only one person qualified to be in that study," said Carey.

State-wide, only four children are currently in the program. Niki Forbing-Orr, a spokesperson for the Department of Health and Welfare, say an additional 18 children are currently in the screening process.

In the wake of Otter's veto, these parents are running out of hope.

"We are truly just doing this to save our children,” said Natalie Stevens, Marley’s mom. “There's no ulterior motive, there's no bigger political spectrum this is just to save our children."

After their bill failed last year Carey is not going to try again this year. She believes any road through the Statehouse is a dead end.