“”Everybody loves Charlie,” boasted father, Eric Byrd,”he’s just always smiling, it’s his personality, he just glows.”
Charlie Byrd looks like every little five-year-old boy and has a smile that will melt your heart. But Charlie is in a dangerous battle for his life against a rare, and even deadly, form of epilepsy called “Dravet Syndrome.”
“He keeps smiling and he doesn’t even know that he’s sick,” said Crystal Byrd, Charlie’s mother, through tears.
The Byrds say the first seizure happened when Charlie was just a few months old, the second came just a few months later when he was six months old. From there the hospital trips added up, as did the pain and the seizures.
“We quit counting, it had become a little hard to deal with,” stated Charlie’s mom.
The Byrds have given their only son everything they can find.
“We’ve tried numerous therapies, medicines, and nothing’s ever worked,” said Eric Byrd, “Today, he’s on four different types of anti-epileptic drugs. This morning he had two seizures in his sleep.”
The West Liberty family even started the young boy on medicine from other countries after doing research. Along the way they connected with other families with children battling “Dravet Syndrome.”
One case stands above the rest. Crystal Byrd pointed to a girl in Colorado who seems to have found a strong remedy, “The child went from 300 seizures to one a week, and sometimes the one-a-week doesn’t even come.”
The medicine, though, is only legal in 19 states and Kentucky isn’t one of them.
“It was the medical marijuana, the CBDs,” answered Crystal.
CBD, or cannabidiol, isn’t like other forms of marijuana, as Crystal explained, she’s not giving her son a cigarette. Instead, she said it can come in the form of an oil or even pill.
“He won’t be high from it, it doesn’t have the taboo marijuana association with it,” she said.
Still, the topic of legalizing marijuana even in medical cases has been, at times, controversial. Yet, it is on the table for politicians to consider in a Wednesday meeting in Frankfort. According to the agenda, advocates for medicinal marijuana, patients, doctors, and even a former narcotics officer will speak before a committee of state lawmakers.
The Byrds are anxious. They say if medical marijuana isn’t allowed, then they might be looking to move to a state that does allow it, like Colorado.
“I can see through conservatory, but I mean how can you look at him and not want to give him a chance?” asked Crystal Byrd.”