By Dean Stephens
CHARLESTON, S.C. (WCIV) — Some parents call it the magic bullet, reducing and at times eliminating seizures in their children who suffer from epilepsy. They are talking about cannabidiol or CBD oil.
It is extracted from marijuana.
Local families are being proactive in making sure their kids have access to the oil, including one West Ashley mother who says she is not trying to be a lobbyist or a political activist, just a mom with a sick child.
The smile melts your heart; the seizures will break it. Six-year-old Mary Louise Swing is a prisoner in her own body.
“There are 200 to 500 seizures a day, and there are eye flutters as well, several hundred of those as well,” Mary Louise’s mother explained during a recent visit at their home.
But it’s not just Mary Louise who is being held hostage.
“Not being able to walk away from my daughter for five seconds to put a glass in the dishwasher. I don’t wear my wedding ring because I’m afraid she will fall and get scratched. It impacts every tiny little thing we do,” said Jill Swing.
It is a support system few families can understand.
There is no known medical cure for kids who suffer from epilepsy like Mary Louise, but a year ago, Jill and her husband Ken did find some hope after watching a CNN documentary by Dr.Sanjaya Gupta.
Dr. Gupta featured a Colorado family who turned to cannabidiol to treat their young daughter. The results were amazing.
But there is a problem for the Swings and other South Carolina families like them: CBD oil is illegal in South Carolina. But it’s not illegal in Colorado.
“We would have to literally move there. We wouldn’t be able to leave. We couldn’t come home to visit because we can’t bring the oil with us; we would have to leave the medication behind which means more seizures,” said Jill Swing.
Earlier this year, bills were introduced in both the South Carolina House and Senate that would make it legal to possess CBD oil in the state.
Instead of up and moving with Mary Louise to Colorado to gain access to the oil, Jill Swing opted to focus her efforts on getting one of the bills passed.
“It has been a very empowering process. It’s amazing I’ve had the opportunity to connect with other families and take their stories to the Statehouse and share them with both side of the House and Senate,” said Swing.
She takes Mary Louise to rehab weekly. As the little girl fights to communicate, her mother fights for other families and their children across the state. Swing has made multiple trips to the Statehouse to state her case for legalizing CBD oil.
“Yes, Mary Louise has hundreds of seizures a day, but they are not life-threatening and we are not rushing her to hospital with purple lips. For many families, their fight is a daily fight to keep their child alive. We have challenges with Mary Louise, I can fight their fight with their help, but I’m not fighting to keep my child alive and they are,” said Swing.
Meanwhile, Swing continues to work with legislators. If passed, the bill and the oil could be a life changer.
“There are children in Colorado that were non-verbal that are saying words and sentences. For Mary Louise to talk to us, to tell us how she’s feeling and what she needs — I think that would be huge,” said Swing.
Imagine never hearing your child say, “I love you.” It’s something the Swings know first-hand.
Coming up on ABC News 4 at 11 p.m., Dean Stephens tell the story of another family that gave up their Lowcountry life and moved to Colorado to get the help needed for their child.
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