Nichole Miller, Virginia

Like many caregivers turned activists, Nichole Miller’s journey began with other people’s stories. For Nichole, it was hearing about Paige Figi and her daughter Charlotte, another mother of a young child battling horrific seizures. But Nichole lived in Virginia, not Colorado.

Then in March, 2015, Virginia became one of more than a dozen states to pass highly restrictive medical cannabis laws that nonetheless provide for treatment with CBD of intractable pediatric seizures. Other people began asking Nichole if she was using or considering cannabis extracts with her then four-year-old daughter. She would answer, “Yes, if we get to that point.”

Relative to other Dravet kids, Sophia was doing great, only experiencing the violent tonic-clonic seizures every couple of weeks. Plus, Nichole wondered about cannabis side effects and hadn’t yet heard real success stories personally. But with the change in law and questions came the opportunity to look closer at whether cannabis might be a good option for her daughter.

The improvements in cognitive function other families reported seeing in their children after beginning cannabis therapies convinced her.  

“With Dravets, there are multiple ways to define success,” Nichole says. “Seizure control, cognitive function, motor skills are each important.”

The turning point for the Miller family was when Sophia started to have a rough spell of chronic infections, with seven bouts of pneumonia in one year. With that, came an intensification of her seizures, which became incredibly difficult to control, requiring lots of benzodiazepine “rescue medication” and Emergency Room visits. 

Nichole first obtained some CBD extract in June, 2015 and started Sophia in July at a dose of 0.75 milligrams per pound. The result was no seizures for three months. The CBD oil has reduced her violent convulsive seizures to less serious complex partial seizures which now often stop with the first dose of rescue medication. After starting CBD therapy, Sophia went eight months without an uncontrollable seizure and has remained stable since. But it was the hoped-for cognitive benefits that have been perhaps the most profound.

“Before we started, she had a vocabulary of just 15 to 20 words,” Nichole remembers. “Now, I don’t even count them. She could only manage two-word sentences before. Now they are three to four words, and Sophia can answer abstract questions about stories we read.”

Before, bright light would trigger seizures, so Sophia could never go outdoors without sunglasses. Now, at age six, she doesn’t need them at all.

“Cannabis has been a real miracle for her quality of life,” Nichole says. “And for mine. You want them to play and have fun, but everything she did was a risk.”

Nichole’s activism is focused on what made a difference for her own decision making: her child’s dramatic improvement with cannabis.

“I share our story as much as possible with people we meet,” Nichole says. “I’m not afraid to announce it. The EMTs at our three local fire stations all know our story from coming on calls.”

Nichole also participates in Facebook forums for Dravet parents and lobbies the Virginia legislature. She hopes to see Virginia expand its program soon to allow personal cultivation and dispensaries, so her family and others like hers will no longer have to break the law to obtain their medicine out of state.

“I’ve called my elected officials and spoken with Delegate Farrell in person,” Nichole says. “Our lawmakers seem receptive and have been very polite. They ask specific questions about changes to the state law, how I feel about it.”

Virginia has no provision for qualified patients or caregivers to legally obtain medical cannabis products allowed under the law. She also hopes to see cannabis-derived medications become a first-line treatment for young children, rather than a medicine of last resort. In the meantime, she’ll continue talking about Sophia’s experience.

“It comes up over and over,” she says. “I have to share my story.

This profile was originally published in the June 2017 ASA Activist Newsletter