FORT MILL, SC (WBTV) - A Fort Mill family says they want a politician – any South Carolina politician – to help them access medicine they say could change their son's life forever.
Six-year-old Braxton Ried has Dravet Syndrome, a rare and catastrophic form of epilepsy that begins in infancy. Every seizure he has is so violent, it becomes potentially deadly. He is often hospitalized and on life support after suffering from one. His parents, Ben and Misty Ried, say he has a couple a month.
To keep him as stable as possible in day-to-day life, Misty and Ben give Braxton dozens of medicines every week, as well as keep him on the intense Ketogenic Diet. This is a special diet requiring every bit of food entering your mouth to be measured.
"Everything has to be measured to a tenth of a gram, to a ratio that is 2.75 grams of fat to every one gram of carb plus protein," said Misty. "It's just crazy."
Misty and Ben saw our special report Monday night on "Charlotte's Web", a liquid medicine made from specific strain of medical marijuana. (See special report here: http://bit.ly/MTRVep)
"Charlotte's Web" has shown to help pediatric epilepsy in so many real-life cases, parents are flocking to Colorado to get it legally. It remains illegal in most states, including the Carolinas.
"There is nothing bad about it," said Ben. "It comes from a plant. All the stuff in it that gets you high has been removed. It could help our son. I am getting more and more aggravated about the fact it's not legal in the Carolinas because I don't feel like I should have to uproot my whole family to try a medicine."
Ben says he has written every single Senator and Congressman in South Carolina, as well as Governor Nikki Haley.
"Crickets," he says. "Crickets in response. Nothing from any of them."
"We actually went out to Colorado in August to meet with other families and a real estate agent," says Misty. "We are thinking about moving for Charlotte's Web. It's just really hard to walk away from Ben's job, our friends and family and the support Braxton receives. But yes, we've thought about moving to Colorado, more than once. It's always at the back of our minds."
Until then, they say they'll keep fighting.
"I sent out another slew of pleas to politicians today," said Ben. "We're not giving up. It seems ridiculous to me that inside the boundaries of South Carolina I can't get this medicine that comes from a natural plant and has all the addictive ingredients removed, while inside the boundaries of Colorado I can."