Florida鈥檚 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 鈥渢ough little cookie.鈥�
鈥淪he鈥檚 a little trooper. That鈥檚 why she鈥檚 laughing and dancing now because she knows she鈥檚 being talked about,鈥� she said.
Gail talks to Lucie. But, Lucie doesn鈥檛 talk back. That鈥檚 because she has a type of epilepsy that causes severe seizures. The seizures slowed her development.
Lucy is 31-years-old. She doesn鈥檛 speak.
鈥淪he talks with her eyes. Every time I look at her, I know what she鈥檚 saying to me,鈥� Gail said.
Gail said Lucie has seizures that can cause her to fall to the ground. She鈥檚 broken her collar bone three times, and has a scar on her face from seizing and collapsing.
, 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鈥檚 now been more than two years.
Hear Gail describe Lucie:
THC and CBD
The product is an oil that鈥檚 a mix of low-THC, which causes a high, and another compound called CBD.
There鈥檚 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 , saying CBD showed 鈥減romising preliminary data鈥�, 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 , which significantly reduced her seizures.
Gail saw that program.
鈥淚 was absolutely adamant and I kept telling everyone about it and in fact my husband he said 鈥楽hut up, Gail, you鈥檙e driving me nuts. Stop talking about it.鈥� And I鈥檓 like, 鈥楴o, we鈥檙e going to get it. We are going to get it.鈥欌��
But, soon after Florida鈥檚 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.
鈥淚t鈥檚 ridiculous. All through red tape. It鈥檚 so wrong. We need to get it available in Florida. Now. Not next week, last year, it should have been available,鈥� she said.
A year ago, Gail made the decision to begin illegally receiving the product into Florida.
鈥淚 have to have it sent to someone else out of state, out of Florida and then they send it to me,鈥� she said. 鈥淚t can鈥檛 be shipped to Florida.鈥�
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鈥檚 room to get the oil. She comes back holding a black box.
Inside is a matching bottle with 鈥淐harlotte鈥檚 Web鈥� written on it. It鈥檚 made by the Colorado-based company, . That鈥檚 the company that assisted the little girl in the CNN documentary.
Normally, it鈥檚 mint chocolate flavor, Gail said. This time, however, her order got mixed up. It says 鈥渙live oil鈥� 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鈥檒l do that twice a day."
Gail said since she began giving Lucie Charlotte鈥檚 Web last July, she has seen improvements.
Lucie recovers faster from seizures, and she鈥檚 having fewer of them. She鈥檚 down to about one a week. That鈥檚 not the only thing that鈥檚 changed, said Gail.
鈥淚 don鈥檛 think I鈥檝e ever seen her articulate as what she is now. Normally, she would be a lot quieter than this. I wouldn鈥檛 have the eye contact that I have these days. I see everything in her eyes as the way she talks to me and she鈥檚 talking to me a lot right through her eyes right now at the moment,鈥� she said, 鈥渁nd it鈥檚 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.鈥�
Gail said she still gets nervous sometimes about obtaining the CBD/low-THC mix from out of state. But, she has no regrets.
鈥淚f you鈥檙e going to save your child鈥檚 life by giving her something that can save her life, you鈥檙e going to do it. That鈥檚 the decision I鈥檝e made,鈥� she said.
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