VA Families Work for Changes to Medical Marijuana Law - NBC29 WVIR Charlottesville, VA News, Sports and Weather

VA Families Work for Changes to Medical Marijuana Law

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A family in Staunton, along with others across Virginia, is challenging legal hurdles because they believe medical marijuana may be the answer to a life-threatening condition.

These parents live in fear that their children are just one seizure away from cognitive damage, or even death, so a group of them met with policy-makers in Richmond this week to plead their case.

Lucy Rhoden, who is two and a half years old, has a rare genetic disorder called Dravet syndrome, a type of epilepsy. She can have dozens of seizures a day, prompting her family to search for better treatment than the medications she's been taking. Now they’re trying to break down the misconceptions surrounding medical marijuana and prevent a tragedy at home.

"Our kids can't wait. We don't know how long Lucy has,” her mother, Melissa Rhoden, said.

Lucy is affable and loves to play and read with her parents, Melissa and Travis Rhoden. But as they celebrated new parenthood, Lucy began suffering from convulsions.

Doctors eventually diagnosed Lucy with Dravet syndrome. Among children with epilepsy, she falls into the one-third of cases with uncontrollable seizures.

"We just want to give her every option, every good moment that we can,” Melissa said.

Lucy takes all kinds of medications to curb her seizures but no drug has made much of a difference. And they have all caused troubling side effects, such as imbalance, weight loss, psychosis, or aggression.

The Rhodens don't advocate recreational drug use, and thought medical marijuana sounded like quackery until they learned of Charlotte's Web, a strain that's low in the chemicals typically associated with inducing a high.

"Medical marijuana shows great promise in treating those seizures. And we really feel that everybody deserves to have every option available to them, especially Lucy, because her seizures are so catastrophic,” Melissa said.

Even though they can't use medical marijuana to treat seizures in Virginia, the Rhodens have no plans to move.

"We don't want to leave. This is where our friends are, our family is, this is where our community is. This is where our doctors are and we do not want to do this without our doctors,” Melissa said.

But hundreds of families in their situation have exhausted their options at home and flocked to Colorado to try out medical marijuana in the form of an ointment. The Collins family is a group of what some call “medical refugees.” Beth Collins and her 14-year-old daughter Jennifer, who has another type of intractable epilepsy, have moved to Colorado, leaving Patrick Collins in Fairfax, Virginia, with their other daughter.

After just a few months of experimentation with medical marijuana, Beth says she has seen improvement in Jennifer.

“She is experiencing increased cognition. She says she can think better. She's scoring better on math tests and other tests that she previously could not,” she said.

Her seizures have been cut in half, but at the cost of separating the family. 

In Whitestone, Virginia, the Smith family also has a daughter with Dravet syndrome, 13-year-old Haley.

"And she's failed 21 pharmaceutical drugs or combinations of them. Last year she had over 800 seizures, in 208 days. We're actually told there is nothing left for her to try,” said Lisa Smith, Haley's mother.

The Smith family's first neurologist was none other than Lieutenant Governor Ralph Northam. After bringing their cause to him and his aides, Lisa says she has hope.

"I feel that there's been people put in our lives at the right time, and this is going to be something that happens. And I think what we need to do now is just educate, the public, the legislature, to let them know, she's not going to be smoking something,” she said.

The families say they will go to the ends of the earth, if that's what it takes to secure the option of medical marijuana to treat their daughters.

"I don't think it should have to be this hard, but the truth of it is that it's becoming easier and easier with every step that we take,” Melissa said.

The families say their goal is not to fight with lawmakers, but rather to work with them and the public in passing a bill to allow medical marijuana in Virginia to treat epilepsy.

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