In June, the state legislature legalized an oil form marijuana called Charlotte’s Web for medicinal use.
It doesn’t have a lot of THC - the substance that gets a user “high,” but it is supposed to have certain medicinal benefits.
A new organization of moms, though, say that’s not enough. They are rallying to get Amendment 2 passed in November. It would legalize a broader spectrum of medicinal marijuana.
Jacel Delgadillo says her three-year-old son Bruno sometimes has up to 300 seizures a day.
He has Dravet syndrome -- a severe form of epilepsy.
“It’s 24 hours," she says. "I put him to sleep next to me I have to hold his hand or his leg because he’s constantly seizing.”
He requires constant care from Delgadillo -- a former teacher and single mom from Miami.
She also has a eight-year-old daughter.
She says doctors -- have tried everything. Last year they decided to try Potassium Bromide -- a veterinary drug.
“He’s taken all of the medication available for Dravet Syndrome," she says, "and they haven’t helped him at all."
She can’t know its true effects -- Bruno doesn’t speak or communicate -- and there’s not much she can read about it either.
“Honestly, I am not really quite sure for the side effects, because when I look it up I have to read on the point of view of an animal," says Delgadillo.
She’s part of a group of Florida moms with sick kids pushing for a different option: Medical marijuana.
They call themselves -- the CannaMoms.
“I joined the CannaMoms because we were desperate mothers trying to save our children.”
They tell their stories at conventions like this one in Boca Raton -- and in front of legislative committees.
They want to spread the word that Charlotte’s Web is limited in what it can do.
CannaMom Moriah Barnhart gives her three-year-old daughter Dahlia cannabis for aggressive brain cancer.
“Even for epileptic patients -- most of them have had to add either THCA or THC into their child’s regimen," says Barnhart.
The Cannamoms want that option in Florida.
After Dahlia’s diagnosis in December, Barnhart moved from Tampa to Colorado, because Dahlia could get injections of cannabis oil there.
“She almost immediately was no longer at risk for having to have a feeding tube put in, she got her appetite back in fact started gaining weight while on chemotherapy for brain cancer -- which is pretty much unheard of, especially in pediatric patients," Barnhart says. "She was taken off of all of her antiemetics for nausea and vomiting, appetite stimulants, Neurontin for neuropathy pain, morphine for generalized pain.”
Barnhart says Dahlia’s tumor is shrinking, -- and she attributes that to the cannabis.
They came back to Tampa in June, after lawyers said Barnhart could continue her daughter’s treatment under Florida’s medical necessity defense.
She wants to be here to fight for Amendment 2.
“She gets up every morning happy to be alive," she says, "and to see her have all of that ripped from her and to be able to give it back to her means more to me as a mother than anything I’ll ever witness with my own eyes for the rest of my life.”
CannaMom Renee Petro’s 12-year-old son Branden has a seizure disorder known as F.I.R.E.S.
She wants to get him off the medications he’s been on for the last four years -- she says they cause hallucinations and depression.
“He actually asks to commit suicide,” she says.
She’s been giving him cannabis oil because she heard it can help wean him off the prescription drugs.
Because of that, she says, the Hillsborough County Sheriff’s Office Child Protective unit visited her home.
“But I let them in, because I’m not hiding anything.”
"They came in, asked some questions, and left. Petro hired a lawyer and says she hasn’t been contacted since.
Barnhart says that's the kind of incident that scares those who could benefit from medical marijuana -- and one reason they must share their stories."
“Everyone would be as compassionate as us if they really, really understood," she says, "and that’s our job."
The CannaMoms say that’s the kind of thing that will scare people who could benefit from marijuana. It's one reason they'll continue to fight for medical marijuana -- between now and November.