Is cannabidiol oil a life changer? 3 SC families say yes
By Dean Stephensdstephens@abcnews4.com
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. Sanjay 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.
Could cannabidiol oil be the next big medical breakthrough?
The oil is extracted from marijuana and contains very small amounts of THC, the component of the plant that makes people high. But CBD oil has been shown to stop or reduce seizures in kids who suffer from epilepsy.
However, it's still illegal in South Carolina. But that's not stopping two families from doing what they say is best for their children, including moving to Colorado.
There is a simple thread connecting Vicki Robinson and Dori Lovell -- the love of a child with epilepsy.
"Taylor depends on us for everything, to feed and bathe and dress, pretty much everything. She's very prompt, dependent on us to lead her what to do: eating, pottying, getting to bed, whatever," said Robinson.
"Julien is very special. He is our heart, he is our grandbaby. He may not know who we are, but we know who he is," said Lovell.
Both families took drastic steps to get their children CBD oil. Two months ago, Lovell's daughter Amanda Denobrega left her Summerville home and moved to Colorado.
"She is determined to do whatever she can to give Jules a normal life that he well deserves," Lovell said.
Three-year-old Julien has global brain damage. He recently started CBD treatments. We were able to see Julian and talk with his mom on Lovell's iPad.
Robinson's daughter Taylor was diagnosed with epilepsy at 6 months old. Now 19, she's been on every drug imaginable.
"She is now on five drugs and one is a narcotic which you hate to get to that point," Robinson said.
Some of those medications could be shelved and replaced with CBD oil. When Robinson heard of the results other kids were experiencing, she too went to Colorado.
"She was back to laughing appropriately. Things that would tickle here, she was very verbal, she was having a ball. I got back her personality," she said.
Robinson said her daughter recovered faster after a seizure. She was able to feed herself and was aware of her surroundings, but CBD oil also gave Taylor something the epilepsy drugs failed to do the past 19 years.
"What changes is the quality of life. It's not healing all of her seizures and taking them away, but at least she has some quality of life that we didn't have before, which we hope to get again," she said.
If a current South Carolina bill is passed, CBD oil would be legalized in the state.
"I think they have a better understanding after all of us have been up to the Statehouse who spoke to legislators," Lovell said.
Amanda and Julian would be able to come home. And moving to Colorado wouldn't be an option for the Robinsons.
"If this was cancer, we wouldn't be sitting here. These kids deserve a chance. Sitting in Charleston and not having the legislation pass, she won't have a chance at life," Robinson said. "And if it were their child, you can't tell me not one of them wouldn't sign up."