When Bruno Stillo was a toddler, it was common for him to suffer as many as 500 epileptic seizures a day, a staggering total that his mother often recorded with a clicker counter designed for golfers.
Through all of those episodes, through an emergency visit to the trauma center at Miami Children’s Hospital where the little boy’s vital signs dropped to life-threatening levels, there was one thing that Bruno never lost:
“I can’t believe he had that many seizures and he could still smile,” said his mother, Jacel Delgadillo, who credits the use of medical marijuana for a radical decline in seizures for Bruno, now age 5.
Delgadillo is among the advocates of medical marijuana chronicled in “WEED: The Story of Charlotte’s Tangled Web,” a new series of images by Palm Coast documentary photographer Jennifer Kaczmarek.
As Amendment 2 on the Nov. 8 ballot offers Florida voters a chance to approve a law that would offer broader access to medical marijuana, Kaczmarek’s photos capture little Bruno’s smile, as well as the anxiety, determination and fleeting, hard-earned joys of parents, children and adults battling major health issues in Ormond Beach, Palm Coast, Orlando, St. Augustine, Jacksonville and Miami.
All of them have either considered medical marijuana or have already seen improvement from cannabis extracts such as Charlotte’s Web, developed in Colorado in 2011 and available to some patients in Florida since 2014.
That year, state lawmakers passed the Compassionate Medical Cannabis Act, making Charlotte’s Web legal for patients with epilepsy, cancer and amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Florida is among 25 states, plus the District of Columbia, that have some form of law allowing patients to use medical marijuana.
Charlotte’s Web, named for a Colorado girl whose epileptic seizures were reduced by the drug, is dispensed as an oil that’s rich in cannabidiol (CBD), but low in tetrahydrocannabinol (THC), the element that gets users high.
Amendment 2 advocates such as those in Kaczmarek’s photos say the law needs to be expanded.
“CBD for chronic seizures won’t help,” said Delgadillo, who has traveled to California for medical marijuana higher in THC for her son’s treatment.
“If I had been able to use THC as a rescue medicine, that probably would have helped us avoid the hospital trauma room,” Delgadillo said. “I need this amendment passed because it’s what helped bring down his 400 seizures a day to maybe 20 a day. Now, he’s at three to five seizures in a week.”
Several mothers photographed by Kaczmarek are members of the CannaMoms, an advocacy group formed on social media that has testified in favor of medical marijuana before state legislators. The 2016 amendment faces opposition from the Florida Sheriffs Association and the Florida Medical Association, among others.
In July, the Florida Medical Association, representing more than 20,000 physicians statewide, passed a resolution against the amendment.
“There is nothing medical about this proposal,” Tim Stapleton, the association’s CEO, said at the time. “The lack of scientific evidence that pot is helpful in treating medical conditions is far from inclusive.”
The Sheriffs Association, meanwhile, issued a resolution in February that “the legalization of marijuana would be contrary to the interests of the public health, safety and welfare.”
That’s not the story that Kaczmarek heard from subjects that she has followed through treatments for roughly two years. She publishes her photos at Taking Focus Inc — Making Pictures Matter, where she also blogs about her experiences documenting the stories.
“I feel people are really misinformed; it’s not talked about and if it was, it would help break the stigma,” Kaczmarek said. “It’s not little kids getting smoke blown in their faces. It’s just oil that they take, two little drops. They’re not getting high. There are a lot of misconceptions about it.”
Another documentary subject, Mercedez McCartney, 45, underwent a year of chemotherapy after suffering two brain tumors six years ago. She wishes now that medical marijuana had been an option.
“I wonder what the difference would have been if I’d had that instead of all that chemo,” said McCartney, a medical assistant in an imaging lab. “I feel like my brain never fully recovered. It’s there, so maybe there’s the possibility that we won’t have to put poisons in our bodies to go through treatment.”
Another documentary subject in Jacksonville found herself under investigation by Florida’s Department of Children & Families after she disclosed her treatment choice for her son’s severe brain malformations to doctors.
Fear of a similar experience keeps Christa Cole from seeking medical cannabis for her son, Cole Rivera, 10, who suffers from autism, sleep apnea and auto immune disorder, among other issues.
“The only thing that holds me back is losing custody of my child,” said Cole of Ormond Beach. “It’s still considered an unlawful drug. The only other option I have is to advocate for people to vote for the use of medical marijuana to be approved for children with autism, not just for epilepsy.
“I have high hopes that people will see that medical marijuana is not for people getting high and partying. It’s for people in chronic pain with no ability to function.”
Another testimonial is offered by Jackie Wiley, whose treatment of her 2-year-old son, Connor, was followed in the photo documentary.
“We had a hard road cut out for us from the beginning,” Wiley said. “He had his first brain surgery when he was 8 months old. Then he developed meningitis and had a stroke as a result of that. After that, he lost the use of right side of his body for several months.
“Our doctor isn’t really against it, but won’t get behind it,” said Wiley of Orlando. “Our goal, all the parents, we just want the research, the evidence backing us, because we’ve seen it work.
“Connor was born with brain abnormalities, as many kids are. It’s not as uncommon as you think, but not many kids have a stroke at nine months. He didn’t recover at first, but he is now. How the cannabis helped him along, it’s very important for other people to see that.”
Kaczmarek plans to keep photographing those seeking and using medical marijuana, even if Amendment 2 passes and the controversy ends.
“I’m going to continue with the work,” she said. “It’ll be a fascinating transition into the next phase, to see how everyone does with it.”
News Moderator: Katelyn Baker 420 MAGAZINE ®
Full Article: Images Document Advocates For Medical Marijuana
Author: Jim Abbott
Contact: 386-252-1511
Photo Credit: Jennifer Kaczmarek
Website: The Daytona Beach News-Journal