Florida’s medical marijuana program took too long to start for the parents of some sick children.
Hear Gail tell their story in her own words:
"A Tough Little Cookie"
Lucie is dancing in her room. There are stuffed animals in a corner next to a white dresser. Her bed is pink, and one of her walls is blue with a pink butterfly on it. Her mom, Gail, sits nearby. She describes her daughter as a “tough little cookie.”
“She’s a little trooper. That’s why she’s laughing and dancing now because she knows she’s being talked about,” she said.
Gail talks to Lucie. But, Lucie doesn’t talk back. That’s because she has a type of epilepsy that causes severe seizures. The seizures slowed her development.
Lucy is 31-years-old. She doesn’t speak.
“She talks with her eyes. Every time I look at her, I know what she’s saying to me,” Gail said.
Gail said Lucie has seizures that can cause her to fall to the ground. She’s broken her collar bone three times, and has a scar on her face from seizing and collapsing.
When Gov. Rick Scott approved the use of a non-euphoric strain of medical marijuana in 2014, Gail believed this could help people like her daughter.
She wanted to be ready for it as soon as it became available, which included attending a meeting in Orlando to learn the rules.
And then, she waited. It’s now been more than two years.
Hear Gail describe Lucie:
THC and CBD
The product is an oil that’s a mix of low-THC, which causes a high, and another compound called CBD.
There’s been some research into the efficacy of using CBD to reduce the severity and frequency of seizures.
Director of the National Institute on Drug Abuse Nora Volkow testified before Congress in 2015, saying CBD showed “promising preliminary data”, and called for more research.
There have also been many positive anecdotes. The mixture was highlighted in a 2013 CNN documentary.
It told the story of a young girl who used the oil, which significantly reduced her seizures.
Gail saw that program.
“I was absolutely adamant and I kept telling everyone about it and in fact my husband he said ‘Shut up, Gail, you’re driving me nuts. Stop talking about it.’ And I’m like, ‘No, we’re going to get it. We are going to get it.’”
But, soon after Florida’s medical marijuana program was signed into law, legal battles stalled its establishment.
Just last month two companies were authorized to begin distributing products.
For Gail, it was too long of a wait.
“It’s ridiculous. All through red tape. It’s so wrong. We need to get it available in Florida. Now. Not next week, last year, it should have been available,” she said.
A year ago, Gail made the decision to begin illegally receiving the product into Florida.
“I have to have it sent to someone else out of state, out of Florida and then they send it to me,” she said. “It can’t be shipped to Florida.”
WGCU News is not identifying Gail or Lucie by their last names in this story because acquiring this mix of Low-THC and CBD out of state is not legal.
A representative from the Florida Department of Health wrote in an email, "Low-THC and Medical Cannabis in Florida may only be legally obtained through the Office of Compassionate Use Registry and from a Department-approved dispensing organization."
A Year Under The Radar
Gail leaves Lucie’s room to get the oil. She comes back holding a black box.
Inside is a matching bottle with “Charlotte’s Web” written on it. It’s made by the Colorado-based company, the Stanley Brothers. That’s the company that assisted the little girl in the CNN documentary.
Normally, it’s mint chocolate flavor, Gail said. This time, however, her order got mixed up. It says “olive oil” on the box, but it smells like marijuana.
"I just put it on some food, on her yogurt, on cold food," she said, "just put it onto a spoonful of yogurt and into her mouth or sometimes a little piece of carrot cake. She likes carrot cake. So she'll love that. And we’ll do that twice a day."
Gail said since she began giving Lucie Charlotte’s Web last July, she has seen improvements.
Lucie recovers faster from seizures, and she’s having fewer of them. She’s down to about one a week. That’s not the only thing that’s changed, said Gail.
“I don’t think I’ve ever seen her articulate as what she is now. Normally, she would be a lot quieter than this. I wouldn’t have the eye contact that I have these days. I see everything in her eyes as the way she talks to me and she’s talking to me a lot right through her eyes right now at the moment,” she said, “and it’s a wonderful feeling and you just feel more secure, just letting her take a few more steps away from you than what you ever did.”
Gail said she still gets nervous sometimes about obtaining the CBD/low-THC mix from out of state. But, she has no regrets.
“If you’re going to save your child’s life by giving her something that can save her life, you’re going to do it. That’s the decision I’ve made,” she said.