For a long time, Jacel Delgadillo wasn't sure her son knew who she was.
Five-year-old Bruno Stillo began having seizures as a three-month-old infant and soon after was diagnosed with Dravet syndrome, a rare form of epilepsy. While his family struggled to make sense of his medications, Bruno seized 300 to 400 times a day. The constant epileptic episodes left him unable to walk or talk, and at one point, one of his seizure medications caused drug-induced lupus, his mother says.
"I used to always tell everyone I don't think my son knows I'm his mother," the Miami mom says. "I didn't think he had the capacity. But since we started him on cannabis, he'll sit on my chest and relax, he's alert to what he sees around him, he can use his finger to get to an app on the iPad. He has a seizure about once a week now. But now I can see that he knows who I am."
Bruno got his first home delivery of cannabis low in tetrahydrocannabinol (THC), the chemical that creates a euphoric high, earlier this year from the Winter Garden-based Knox Medical facility after the historic passage of Amendment 2 last November. Seventy-one percent of Florida voters approved the constitutional amendment that expands the state's medical marijuana program to patients with conditions like post-traumatic stress disorder, cancer, glaucoma, epilepsy, HIV, AIDS, ALS, Crohn's disease, Parkinson's disease and multiple sclerosis. Bruno is one of 5,525 patients in Florida registered to receive medical marijuana as of March 14, and state Department of Health spokeswoman Mara Gambineri says the office is receiving, on average, about 100 new patients per day.
Amendment 2 gave lawmakers and the state health department six months to establish new rules for the medical marijuana system, and nine months to start giving patients their identification cards. But looking at the proposals Florida lawmakers have filed so far, including a measure that would ban smoking and edibles, Delgadillo worries the state will limit how her son can take his medicine. Bruno currently takes about a dozen drops of medical marijuana oil by mouth every day, but Delgadillo wants every option on the table if it offers the possibility to make her son feel better.
"Our children are growing, and we don't know which form of cannabis will be the best for them," says Delgadillo, who is also an activist with the medical marijuana advocacy group CannaMoms. "Right now he's taking the oil form, but some adults have to smoke the medication. We need this medicine as a whole and there shouldn't be exceptions on parts of it. This should be something decided between a doctor and patient, not people making regulations. They don't really know what we go through."
Lawmakers say they're keeping patients at the forefront as they draw up rules for this budding industry projected to make $1.6 billion in the next three years, including strict regulations designed to combat recreational use of the drug. But patients and advocates are decrying some of the proposals put forth by Florida legislators, saying they create burdens for sick people and ignore the will of the voters.