GULF BREEZE – On good days when her epileptic seizures aren’t severe, RayAnn Moseley laughs, sings, dances, swims and practices with the children’s choir at her church. She easily brings smiles to the people around her.
On bad days, the 11-year-old wakes up in bloody sheets or lies down on the school floor and says nothing all day. When her seizures become particularly intense, she is rushed to the hospital.
The images of those extremes collected in a collage helped persuade Florida lawmakers to support a bill that will soon allow parents to treat their epileptic children with marijuana that has a low amount of THC, the chemical that causes intoxication. What seemed improbable a few months ago is now about to become a law with the help of a severely epileptic girl whose story melted hearts.
“When we first started this, people were like, ‘Are you crazy? It’s never going to pass,”’ said RayAnn’s father, Peyton Moseley, who along with his wife, Holley, met with dozens of lawmakers showing them the photos of RayAnn. “They could see the difference when she’s having good days as opposed to when she’s having bad days. It helped to really put a face on it.”
Even Gov. Rick Scott, who has firmly opposed medical marijuana, welcomed RayAnn into his office, hugged her and assured her parents he would sign the bill.
Once Scott signs the bill, which passed the Legislature overwhelmingly on the last day of this year’s legislative session, strains of marijuana with low amounts of THC and high amounts of cannabidiol, or CBD, which is used to treat seizures, will be legal in Florida for certain medical conditions.
Still, a handful of House members raised concerns, including a lack of U.S. Food and Drug Administration approval for the drug’s use and the possibility that the bill will open the door for wider spread use of marijuana.
“This could be the rifle shot that starts a massive avalanche,” Rep. Dennis Baxley, R-Ocala, said after the vote. “When I look at that I simply can’t pull the trigger.”
The journey to passage began late last year when the Moseleys traveled from the Pensacola area to Colorado and talked to parents of epileptic children whose seizures have been reduced or eliminated after treating them with oil from a marijuana strain known as “Charlotte’s Web,” named for the epileptic girl it originally helped in 2012. They also talked to the Stanley brothers, marijuana growers who developed the strain, which is legal in Colorado.
That’s when they decided to seek the treatment’s legalization in Florida, teaming up with two lobbyists and a publicist who donated their time. Simultaneously, conservative Panhandle Republican Rep. Matt Gaetz was being pressured by a Democratic colleague to support the idea of legalizing Charlotte’s Web. He was skeptical, but willing to listen. He set up a phone call with the Stanley brothers, who told him about the Moseleys.
“I was not on fire for the issue until I got to meet the Moseleys,” Gaetz said. “Sharing the Moseleys’ story lit a fire in me that I couldn’t find a way to put out until passing this bill.”
Part of that story is how RayAnn came into the Moseleys’ lives. RayAnn’s birth mother was a prostitute and drug user. She often didn’t get the medication doctors prescribed to treat the seizures that have tormented her since birth. The state took custody of RayAnn when she was 2, but it’s not easy finding foster parents for a child with cerebral palsy and intractable epilepsy. They placed her at a hospital where Holly Moseley, a pediatric nurse, saw her in a crib covered with netting.
“We just connected. You just can’t help but fall in love with those blue eyes,” Moseley said. “You could just see inside of her that need for love.”
Three days later, Moseley was off but couldn’t help thinking about RayAnn stuck in a crib that looked like a cage. Christmas was approaching and she got permission to have RayAnn join her family for the holidays.
“She laughed the whole night - there was just a big smile on her face,” Moseley said. Right after Christmas, the Moseleys hired a lawyer and started a three-year fight to adopt RayAnn, whose birth mother resisted giving her up. The same month Moseley gave birth to her first of two biological children, RayAnn became the couple’s adoptive daughter.
“On the good days, it’s fabulous,” said her teacher, Angela Pettus. “She is just so much fun, she is such a joy. She keeps us laughing, she keeps us entertained.”
But on the bad days she can be angry and frustrated either by the side effects of her medications or when her seizures increase in intensity.
“She will go through spurts of extreme growth where she’s getting things, things are starting to click. She’s doing great, she’s reading, she’s comprehending, she’s doing math,” Pettus said. “Then she’ll go through a period of seizures and she’ll lose a lot of it and we’re back to square one again. It’s hard to watch that in a child.”
“There’s just a lot of intelligence in there, that if they could get her seizures under control and they could get her leveled out, her doors could be wide open,” Pettus said.
RayAnn’s cerebral palsy affects her ability to speak and, while her parents understand her, most people have a difficult time communicating with her. The Moseleys hope that could change with help from Charlotte’s Web.
“In the state of Colorado we do know that 85 percent of children who are using non-euphoric marijuana to control seizures and spasms have seen a 50 to 100 percent reduction in those seizures,” Gaetz said.
“I imagine that there’s this whole other inner being in RayAnn that hasn’t come out yet that wants to come out, that just hasn’t physically been able to come out. I just look really look forward to meeting her for the first time pharmaceutical free,” Peyton Moseley said. “I don’t think God has brought us this far for it not to work.”