BAY VILLAGE, Ohio - Parents will do anything to protect their children. And Bay Village mother Paula Losekamp Lyles was willing to do anything — including splitting up her family — to stop her daughter Jordan's frightening seizures.
Watch the full report on NewsChannel5 at 6 p.m. Thursday.
We first met the family last October, as they prepared to take a drastic step: Paula would move to Colorado with Jordan, leaving the rest of the family in northeast Ohio, so her daughter could have access to medical marijuana.
From infancy, Jordan Lyles suffered with life-threatening seizures. They could be triggered by anything: light, temperature changes. It took years to come up with the correct diagnosis of Dravet Syndrome, a catastrophic form of epilepsy that only worsens with time. Powerful drugs failed to control the seizures and had devastating side effects, both mental and physical, for Jordan, who is now 18.
Paula began to learn more about children with Dravet Syndrome who were successfully treated with cannabis oil from a particular strain of marijuana called Charlotte's Web. It is cultivated specifically to have almost no THC, the psychoactive ingredient that gives users a "high", and high levels of a cannabinoid called CBD. It is this oil that, anecdotally, has had a real impact on treating seizures.
The Lyles are among a growing group in Colorado's "New Home New Hope" community, hoping their home states will move forward with legalization of medical marijuana. Paula Lyles said Jordan is doing much better, having 75 percent fewer seizures, is "bright-eyed and more alert" and has more stamina. She is down to half the medication she was taking here.
From a medical standpoint, a doctor who knows as much about the subject as anyone is CNN's Dr. Sanjay Gupta. He has spent several years investigating the use of medical marijuana around the world, which completely reversed his opposition to medical marijuana. Dr. Gupta has followed dozens of patients who are using cannabis oil to treat seizures.
In an interview last fall, he said, "Every child, about 100 of them now, that have tried cannabis after going through meds to treat epilepsy, has had some benefit. Some have had incredible benefit, off all meds. But it's hard to study a substance in the US that is illegal, and that is part of the problem."
Twenty states and the District of Columbia have legalized medical marijuana. There are efforts on several fronts in Ohio, including The Ohio Rights Group , to get the issue before voters in November of 2014.
Despite the fact that in poll after poll, the vast majority of Ohioans support legalizing medical marijuana, it remains a DEA Schedule 1 drug with "no currently accepted medical use and a high potential for abuse." That is the same category as heroin and LSD. It is a higher category than cocaine and methamphetamine.
The current contradictory patchwork of state and federal law is creating uncertainty and confusion, and forcing families who don't want to go "underground" and use the drug illegally to move to states where it is legal.
For Paula Lyles, it feels like her daughter is coming back to her. And she says more families from Ohio are arriving every month to help their children with cannabis treatment.