For Jacel Delgadillo of Miami, Florida, having access to medical cannabis meant having access to her son. Delgadillo’s 5-year-old son, Bruno Stillo, was born with a rare, incurable, and debilitating genetic form of epilepsy called Dravet syndrome, or Severe Myoclonic Epilepsy of Infancy (SMEI). When the condition was at its worst, Bruno endured up to 300 seizures a day. In 2013, Jacel traveled to Colorado to seek information about treating Dravet syndrome with cannabis oil. While there she met Dr. Sanjay Gupta, who was in Colorado filming his CNN documentary Weed 2. Bruno began using medical cannabis oil to mitigate his seizures. With the oil, Bruno averaged one to two seizures per week.
Delgadillo was eventually able to register Bruno in a Phase 3 drug trial that allows him to take a form of cannabidiol (CBD) being developed by GW Pharma specifically to treat children and young adults with Dravet syndrome. He’s currently receiving treatment as part of that trial.
But Delgadillo tells Leafly it wasn’t until 2014, when she traveled to California and added THC to the mix, that Bruno’s seizures plummeted. “I don’t want to give the CBD credit for his decrease in seizures,” she says “CBD helps cognitively as a neuroprotectant, but I live and beg for THC. It’s what’s lowered the 300 seizures a day and what works best as a rescue drug instead of using benzodiazepine.”
With the help of cannabis, Bruno has gone from being a vegetative and non-responsive child to an active, curious and aware 5 year old. “It’s like magic now,” Delgadillo says about how attentive Bruno has become. “I honestly thought before that he didn’t know I was his mom. I feel like he knows now.”
Delgadillo has been an outspoken champion of medical marijuana legalization and a co-founder of the group Cannamoms, which supports and advocates for chronically ill children whose conditions may be helped by medical cannabis. Eleven days before Florida votes on Amendment 2, a statewide measure to legalize medical marijuana, photojournalist Scott McIntyre spent a day with Jacel and Bruno, documenting their joys and struggles.
In Delgadillo’s home, everyone does their part to take care of Bruno. Here, her stepfather Mario Vallecillo plays with Bruno before helping to get him in the car for therapy in Miami, FL on Friday, October 28, 2016.
As part of being issued the investigational drug with cannabis oil, Delgadillo has to keep track of her son Bruno Stillo’s seizures while taking the drug by calling into a service to mark his progress.
In Delgadillo’s home, everyone does their part to take care of Bruno. Here, her stepfather Mario Vallecillo help to get Bruno in the car for therapy. Bruno goes to therapy three times a week for speech/feeding, occupational, and physical therapy. Since he began using medical marijuana, he has steadily improved in all areas of his therapy, when before there was not much progress.
Occupational therapist Erika Bermeo helps to guide Bruno Stillo as he exercises his crawling during a therapy session. Before he began using medical marijuana, Bruno was mostly immobile. Since he started integrating it into his daily medication, his motor skills have improved and his epileptic seizures have drastically decreased.
Bruno Stillo shuffles along the floor as he exercises his crawling.
In between therapy sessions, Jacel Delgadillo shares a moment with her son Bruno. “We love to see how much he’s grown and how much he’s learned,” said Delgadillo.
Jacel Delgadillo rarely has a moment to relax. Her days are filled with watching and caring for Bruno, 5, along with her daughter Angelene, 10. Here, she returns home after her daughter’s after-school program in Miami before getting her kids ready for a Halloween event at the school. “Even though it’s hectic, we’re happy.”
Words of support from Bruno’s sister Angelene. Delgadillo says that having five people living in one small apartment is tough, but she relies on everyone to do their part in taking care of Bruno.
While Bruno moves about in his playpen, his nurse Idania Gonzalez takes a brief rest while watching over him in their Miami. When his mother isn’t watching over him, Gonzalez is always watching to make sure he’s safe.
Throughout his day, Bruno is constantly looking at his surroundings.
While they were out at the Halloween event, Bruno became sick, so Jacel decided it was best for him to leave after she gave him his CBD medicine with the help of their nurse Idania Gonzalez. During social events, Delgadillo has to keep extra close watch on Bruno.
Angelene plays with her brother Bruno. Before he started using medical marijuana, Bruno did not seem aware of the people in his life. “We love to see how much he’s grown and learned,” said his mother Jacel.
