Nicolas Peruyero was 8 years old, blind and unable to walk or talk when his mother saw a documentary about the benefits of medical marijuana and its promise to reduce seizures.
For a few moments, Nancy Peruyero imagined what Nicolas’ life might be like without the relentless myoclonic seizures every day. And for the first time, she allowed herself to hope, an emotion she had rarely felt since that August afternoon in 2009 when her youngest son was diagnosed with Batten disease, an unusual neurological disorder marked by seizures, loss of motor skills and mental impairment. His life expectancy with the disease is no more than 12 years. He turned 9 on Oct. 2.
“We want to try medical marijuana in hopes that it will calm his seizures and help him become more alert and sleep better,” said Peruyero, 41, who first watched the CNN documentary Weed about a year ago. “We want to be able to have all our options. For us, this is a quality of life issue. What parent would not do everything they could to help their child?”
Politics aside, for families with medically needy children, Florida’s march into the world of medical marijuana — fraught with differing opinions by legislators, medical professionals and patients, and little scientific evidence — is personal, built upon the anecdotal evidence of cannabis’ healing properties. It’s not a miracle drug, they say, but rather a compassionate alternative treatment.
These families are faced with balancing the hope that expanded medical marijuana will become available if Florida voters pass a constitutional amendment on Nov.4 and the daunting reality that even with that approval, the marketplace could be a long time coming.
For Peruyero, doing “everything” for her son means access to the so-called Charlotte’s Web non-euphoric strain of the drug, approved for medical use by the Legislature last spring for children with cancer, intractable seizures and other serious conditions. Everything also means the approval of Amendment2, which would allow other strains of medical cannabis to be used. Without the range of strains that Charlotte’s Web and Amendment2 would jointly provide, some families are even considering leaving Florida for other states such as Colorado and California where medicinal pot is allowed.
“We know this is experimental in the sense that we don’t know if Charlotte’s Web will help us. But we will try,” Peruyero said. “What we want is the ability to be able to try the other types, too.”
The possibilities of medical marijuana have made advocates of these parents, some gathering signatures to put the measure on the ballot. Some are part of Facebook-powered circles where the posts and discussion are all about the latest research, the drug’s therapeutic benefits and personal stories of children already being treated with various strains in other states — as chronicled in the documentary Weed. Dr. Sanjay Gupta’s CNN special, which first aired in August 2013, featured Charlotte Figi, a little girl in Colorado who was having having 300 seizures a week. She began using medical marijuana as a treatment, and her seizures were reduced to two or three a month.
But there is still hesitation among some medical professionals who say the science has not caught up with the movement.
“I don’t want to have children with these seizures or want their families to be faced with that kind of pain,” said Dr. Judith Schaechter,interim chair of Pediatrics at the University of Miami Miller School of Medicine. “And I know these families are hoping this is the right thing to do. But I also want to be cautious and use science and clinical trials first to see what we are working with.”
With so many states considering legalization, the American Epilepsy Society issued a position statement: “The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports and that robust scientific evidence for the use of marijuana is lacking. The lack of information does not mean that marijuana is ineffective for epilepsy. It merely means that we do not know if marijuana is a safe and effective treatment for epilepsy”
The use of medical marijuana is legal in 23 states, including Florida, and the District of Columbia. Florida joined the movement with the passage of the Compassionate Medical Cannabis Act earlier this year. The new law allows five medical marijuana dispensaries in the state to cultivate marijuana low in tetrahydrocannabinol, or THC, the chemical that provides a high, but high in cannabidiol, or CBD, which can calm seizures. Once the dispensaries are licensed, the plants will be processed into an oil form of the strain called Charlotte’s Web and taken orally.
The amendment on the November ballot is much broader. The Florida Right to Medical Marijuana Initiative, commonly known as Amendment2, was championed by the United for Care grassroots campaign. Doctors and patients must be certified before receiving marijuana through authorized dispensaries.
The amendment, which requires a 60 percent majority to become law, names nine eligible medical conditions: cancer, glaucoma, human immunodeficiency virus infection (HIV), acquired immunodeficiency syndrome (AIDS), hepatitis C, amyotrophic lateral sclerosis (ALS) or “Lou Gehrig’s disease,” Crohn’s disease, Parkinson’s disease, and multiple sclerosis. It also includes other conditions in which a doctor could determine that the use of medical marijuana would likely outweigh its potential health risks.
Those against the amendment say that its broad language and loose regulation could allow doctors without appropriate training to prescribe the marijuana for medical uses. Others believe passage of the measure would make way for widespread abuse of the drug. Opponents include the Florida Medical Association. But if the amendment passes, the Florida Legislature ultimately will decide what rules to impose to protect the public in the distribution of medical marijuana.
Even if both laws are in place, it’s unclear how long it will take before the medication is available. The earliest is possibly next summer after the regulations are established and nurseries are selected to begin harvesting the marijuana crops.
“My daughter suffers every day, and there are lots of other families in the same situation. It’s painful to watch and painful not knowing if the next seizure is the one that kills her,” said advocate Seth Hyman, among the most vocal parents supporting both measures.
Hyman, whose daughter has a rare genetic disorder, testified before a Florida House subcommittee in January. “This is a really long process, and we have to wait while our children are in jeopardy. And God forbid Charlotte’s Web doesn’t work and Amendment2 doesn’t pass giving us other strains to try. Then what?”
Inspired to try
Every week, Jose Buraschi makes the hour-long drive from his home in South Miami to a pediatric nursing facility in Plantation to visit his son, Alessio. Though the 6-year-old is asleep on this visit, Buraschi holds his son’s hand and talks to him about the family, about his mother and two brothers, about a life without him there.
“I want to believe that he knows our voices, that he knows who we are,” Buraschi said, tearfully.
Alessio had his first seizure at 3 months old. His condition deteriorated until he was having 50 to 300 seizures a week. Doctors eventually diagnosed him with multiple conditions including a brain disorder, cerebral palsy and scoliosis. He is a quadriplegic, partially blind and unable to talk. Last year, his parents moved him to Kidz Korner so he could be monitored around the clock.
“He slept in the room with us, right by us. Twice, we woke up and found he had vomited on himself. Our greatest fear was he would choke and we would lose him,” said Buraschi, a father of three boys including Alessio.
Buraschi became a believer of medical marijuana after learning about Charlotte Figi, the Colorado girl whose parents used the extract of marijuana plants to treat her Dravet syndrome. Her seizures subsided, and Charlotte became the face of the movement and inspired the Charlotte’s Web brand name of a particular high-CBD/low-THC strain.
“Charlotte’s story caught my eye. She had seizures. Alessio has seizures, so I am thinking maybe it will work,” said Baraschi, who helped to gather signatures for the petition to put Amendment2 on the ballot.
Alessio is taking nine medications. He has already been on a special diet and had a pacemaker-like device implanted in his chest to reduce seizures. Doctors have told his parents that brain surgery is not an option, either.
“There is a chance it might not work,” Buraschi said. “Our last resort really could be marijuana. We have heard so many successful cases, it’s something we have to try for our son.”
For Jacel Delgadillo, Nov.4 will determine her next address. The Miami mother of a toddler with Dravet Syndrome — a form of intractable epilepsy — is planning to move to Colorado Springs if Amendment2 does not pass.
“I don’t want to leave my home and my family, but I feel like I have to be able to give Bruno a fighting chance,” said Delgadillo, who also has an 8-year-old daughter. “It won’t be easy, financially and without the support of my family.”
Bruno’s story echoes the others: born without complications, then sudden onset of seizures, followed by an anxiety-ridden stretch as doctors tried to determine what was wrong. Eventually, the diagnosis of something neurological in nature and an uncertain prognosis.
After several trips to Colorado, Delgadillo applied for and received a medical marijuana license and card in April, which allows Bruno to be treated with the oil to reduce his seizures. Last week, she traveled to California to research that state’s cannabis program.
Since he was three months old, Bruno has been on a series of medications. Developmentally delayed and now 3, Bruno cannot speak, walk or sit up on his own. The seizures, big and small, come throughout the days, sometimes reducing him to tears.
If Delgadillo moves to Colorado, she will become a medical refugee of sorts, joining a growing number of parents from across the nation with sick children who believe they have run out of pharmaceutical options.
They include Francis and Cristi Bundukamara, who left their lives behind in Miami last year — she was a nurse practitioner and Miami Dade College professor, he was a South Dade Senior High teacher and football coach — to have their children treated with medical marijuana.
Their two youngest children, Reggie, 15, and Miah, 14, have dentatorubral-pallidoluysian atrophy, or DRPLA, a rare, degenerative and terminal brain disorder. The siblings both have seizures, although Reggie’s condition is more severe. He is now unable to walk or talk and requires constant care.
“When we first heard of medical marijuana as a treatment, we were thinking of it as palliative. It took four or five friends calling and emailing about it and then watching the CNN special for us to think of it as an active treatment,” said Cristi Bundukamara, 42. “I saw that special in September. We moved in November. My son is very, very sick — we needed something quickly. I wasn’t confident that it was going to come to fruition in Florida. Waiting a year for it to pass and then another year to establish the grows, we didn’t have that kind of time.”
Within a month of starting on Charlotte’s Web oil, the seizures were reduced in both children by about 50 percent. They were also able to reduce Miah’s medication by about 70 percent. Then the numbers leveled off.
“We are still trying to figure out the ratio that works for my children. Last month, for example, we began adding more THC for Reggie and he only had three grand mal seizures,” she said. “It’s truly experimental.”
If not cure, a comfort
Back in Miami, Peruyero was just beginning to share Nicolas’ story at B&V Thera-Pro Associates, a center offering physical, speech and occupational therapies, when he began to choke during a therapy session. She quickly grabbed her portable suction machine to draw the fluids from his mouth. “He has lost the ability to swallow due to the illness, so all the secretions pool in his throat and then he coughs it up eventually. We have to catch it so he does not choke,” she said calmly.
Nicolas was born without complications. He was walking and learning to speak, but at 3 years old, he suddenly became clumsy — the result of seizures. “He would collapse and fall to the ground and pick himself up, then fall again,” she said.
An MRI showed brain atrophy, meaning a loss of neurons and their connections. He started having seizures, small and large. It took about a year for doctors to diagnose him with Batten disease. Now Nicolas has lost most of his motor skills, requires 24-hour care and takes 29 medications daily, including four to treat his seizures.
“This is a difficult stage for us with Nicolas. We know the medical marijuana will not cure him,” Peruyero said. “But maybe it will extend his life or make it better for him during the time he is here.”