ABC 13 Special Report: "Growing Hope" - Medical Marijuana in VA
Virginia Beach, VA - To most people, Caleb Thomas looks like an average 13-year-old.
But intense seizures everyday of his life have robbed him of that normalcy.
When we first met Caleb's mother Tracie back in 2014, she was at the end of her rope - living in and out of the ER while trying to find her son a treatment that worked.
Doctors continued to come up short, giving Caleb a list of meds - some with dangerous side effects - but offering few definitive answers. That's when Tracie found out about cannabinoids - or CBD - derived from marijuana.
"I was raised with 'this is a drug, this is a bad thing', so I really had to come full circle with that, but for Caleb, it was worth it, " Tracie said.
Epidiolex is a pharmaceutical-grade cannibidiol from the U.K. that does not get the user high and comes with fewer, gentler side effects.
And for Caleb, it's worked wonders. Tracie says it's cut his weekly seizures in half.
"We saw changes in the first 30 days. He's more alert more aware, more attentive, " she said.
Dr. Paul Lyons in Winchester is the man who led the study that provided Caleb with the oil.
"I had parents that were desperate and I felt this was the right thing to do for them, " Lyons said.
Getting the study approved by the FDA and DEA wasn't easy, but he says some of the results for these patients have been remarkable.
"Children who came in in wheelchairs are now walking. Children who were not willful are now vocalizing and reaching for objects. What every parent wants for their child is independence, so what these small victories do is they move their children toward a greater level of independence, " Lyons said.
"You're searching for something that just works. And to find something that gives him a little bit of his life back, it's amazing, " said Tracie.
But for other parents whose children are not in a study, the laws are still holding them back.
Last year, Governor McAuliffe signed a bill into law allowing children and adults to have the oil in their possession, but the bill offered no way for parents to obtain it. That means they must get it sent to them illegally or risk arrest while traveling across out of state to get it and traveling back home.
"Every month, we're faced with the decision of where are we going to get our oil and do we defy federal law to do so? Or ask someone else to defy federal law to send it to us?, " said the mother of Haley Smith, 15.
A group of parents and their children - all suffering from epilepsy like Caleb - stood together in Richmond to support Senate Bill 701 which would allow the oil to be produced and distributed here in Virginia - eliminating the need to transport the medicine across state lines.
Earlier this month, Virginia's Senate passed the bill 37 to 2. As the bill now goes to the House, these parents are hopeful their children won't have to suffer in silence much longer.
"We need to feel safe. We need to have options. Please help our children and do what's right for them."
Many of the parents and Dr. Lyons agree that the next step is to get CBD reclassified at the federal level. They say changing it from a Schedule 1 drug to a Schedule 2 would allow researchers to study its potential benefits more freely - and possibly help others running out of options.