I am the mother of a very special little girl. My daughter RayAnn is a beautiful, blond 12-year-old with electrifying blue eyes, an infectious laugh and a smile that can brighten the room. Like most 12-year-old girls, RayAnn has a lot of sass and her own opinions about the world around her. Unlike most 12-year-old girls, RayAnn fights for her life every minute of every day.
My husband and I adopted RayAnn from the state when she was 2 years old. She was born with cerebral palsy. She also has intractable epilepsy, which causes her to have hundreds of seizures a week. RayAnn is unable to reach her full potential due to the constant seizures and the trial and error we have been through with pharmaceuticals trying to find something that helps her. The last time she was tested, it was determined that developmentally, RayAnn is equivalent to a 4-year-old child.
Every morning when I wake up, I have no idea if this will be the day I discover my child did not survive the night. Every morning, I wash bloodstained and soiled sheets because at some point the night before, RayAnn had violently seized in her sleep, causing severe nosebleeds and loss of bodily function. Several times a week, I check her out of school because her seizures have caused her to become physically ill and exhausted. This has become our normal.
As a parent, it is always difficult to watch your child struggle. It becomes unbearable when you know there is something out there that can help her, that has been approved by the Legislature and signed into law by the governor, and yet you do not have access to it.
Last year, I fought for the Charlotte's Web legislation. I fought for moms like me, children like RayAnn, cancer patients and those with neurological illnesses. I fought for relief. I fought for hope. And thanks to the compassion of Reps. Matt Gaetz and Katie Edwards and Sens. Rob Bradley, Jeff Brandes and Aaron Bean, the Charlotte's Web legislation overwhelmingly passed the Legislature and was signed into law by the governor.
That was such a good day. For the first time in a long time, I felt hope for RayAnn's future. My baby and 125,000 patients like her were finally going to get help.
I had no way of knowing that a year later RayAnn would still not have received her first dose of high-cannabidiol oil. I could not have fathomed that some of those with a financial interest would actively stand in the way of the progress the Department of Health was trying to make on behalf of sick children. I was unaware how selfish and greedy some people could be.
In the year since we began this fight, many of the children who were the faces of the fight for Charlotte's Web in other states have died waiting on the process to help them. Will my little girl be the next martyr for this cause? I can't stand by and let this happen.
The public has been able to weigh in on this issue in six legislative committee meetings, one public hearing and three workshops at the Department of Health. Patty Nelson at the Office of Compassionate Use has been accepting public comment and suggestions by email for months. The two-day rule negotiation workshop at the Department of Health was open to the public and streamed live on the Florida Channel's website.
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Explore all your optionsEveryone has had adequate time and opportunity to ask questions, offer suggestions, log complaints and weigh in on how the Compassionate Medical Cannabis Act should be enacted in this state. Anyone seeking to challenge or question the rule at this point is doing so to further stall the rulemaking process and for their personal gain.
Enough is enough. The process has been fair, open and transparent. There is no excuse for the rule to be challenged again. The Compassionate Medical Cannabis Act wasn't written to generate profits; it was written to sustain lives. It is time to fulfill the promise of hope our leaders made last year. Thousands of lives hang in the balance.
Holley Moseley is a patient advocate for Charlotte's Web and the executive director of Realm of Caring Florida,a nonprofit that provides counselling services, resources and hope to patients and families seeking cannabinoid products in Florida. She wrote this exclusively for the Tampa Bay Times.