Medical cannabis makes every day special for this mom
Scott McIntyrePublished on May 10, 2019· Last updated July 28, 2020
Jacel Delgadillo quietly tries to wake up her son Bruno Stillo with kisses at her home in Miami, Fla. on Wednesday, May 1, 2019. Since he's been able to legally take forms of medical cannabis oils after Amendment 2 passed in 2016, his seizures have dropped to about one a week. Prior to using medical cannabis oil, during the worst of Bruno's Dravet syndrome, he would experience up to 300 seizures a day. “It’s scary, but at the same time, it’s exciting. Before I was able to leave him on a bed, and keep an eye on him so he doesn’t have a seizure and now I have to keep an eye on him so he doesn’t fall,” Delgadillo said. (Scott McIntyre for Leafly)
On November 8th, 2016, most of America was awaiting the results of the presidential race between Hillary Clinton and Donald Trump. In Miami, though, Jacel Delgadillo was rejoicing at an election watch party after Amendment 2, a statewide measure to legalize medical marijuana in Florida, had passed.
Delgadillo had been an outspoken champion for medical marijuana after seeing the effects it had on her son, Bruno Stillo, who was born with a rare and debilitating form of epilepsy called Dravet syndrome.
Bruno before legalization, Friday, October 28, 2016: Jacel and Nurse Idania give medicine to treat his stomach after several throw ups in Miami, FL. “He doesn’t walk, he doesn’t talk, he’s immobile, and if he’s in pain, I have to figure out why,” said Delgadillo to Leafly in 2016. Click here to see more of their journey. (Scott McIntyre for Leafly)
Jacel after legalization Spring 2019. Jacel Delgadillo takes a moment to herself as she gathers her son Bruno Stillo’s shoes and medical bags together before his therapy session. Delgadillo is co-founder of Cannamoms, which advocates for chronically ill children whose conditions may be helped by medical cannabis. (Scott McIntyre for Leafly)
Her main reaction was one of relief. “Finally, Bruno can be a legal patient,” Delgadillo said, recounting her thoughts upon hearing Amendment 2 had passed. “Finally, I don’t have to fear the law. And finally, I can get him relief without fearing that I will have anybody come after me for his medication.”
Over the past two years, Delgadillo has been able incorporate THC, CBD, and THC/CBD combination oils and sprays from various dispensaries into Bruno’s treatment. When she spoke to Leafly in 2016, Delgadillo’s son was taking four pharmaceutical medications, along with a CBD oil as part of a clinical trial. Today, Delgadillo has Bruno on just one pharmaceutical drug, Clonazepam, and a mixture of THC and CBD products.
Delgadillo says that she’s afraid to take him off the last pharmaceutical since he’s so well controlled now, as far as his seizures and mobility are concerned.
Jacel Delgadillo tries to wake up her son Bruno Stillo with kisses at her home in Miami, Fla. on Wednesday, May 1, 2019. Since he’s been able to legally take forms of medical cannabis oils after Amendment 2 passed in 2016, his seizures have dropped to about one a week. Prior to using medical cannabis oil, during the worst of Bruno’s Dravet syndrome, he would experience up to 300 seizures a day. (Scott McIntyre for Leafly)
Bruno’s alertness has never been higher, which brings its own challenges.
“He’s become so alert that he notices patterns, which he wasn’t able to before THC,” Delgadillo said. “But with his condition, patterns can be a trigger for seizures.”
Bruno’s improvements have surprised both Delgadillo and Bruno’s therapists. Their top goals for Bruno were for him to crawl, for him to sit on his own, and for him to stand. Those milestones have all been accomplished since he’s been able to include THC as part of his treatment.
Samples of different medical cannabis oils and sprays that Jacel Delgadillo has accessed through legal Florida dispensaries for her son Bruno. (Scott McIntyre for Leafly)
“I honestly thought we were never going to get there,” said Delgadillo.
During the worst of his condition, Bruno was having up to 300 seizures a day. Now he experiences around one per week. Since establishing his new legal-MMJ regime, Bruno has gone for periods of as long as two weeks without a seizure, which Delgadillo said was previously unheard of.
Before Amendment 2 passed in 2016, Bruno was taking four pharmaceutical medications and one trial CBD oil. Now, Delgadillo has Bruno on just one pharmaceutical drug, Clonazepam, and the rest are THC and CBD products. (Scott McIntyre for Leafly)
One of the family’s proudest moments came when Delgadillo had Christmas photos taken of her daughter Angeline standing alongside Bruno in 2017. It was one of the first photos of Bruno standing, ever. He was 6 years old.
“That was a huge success for us,” said Delgadillo.“That was like winning the lottery for us.”
Even though Bruno is experiencing these changes and improvement first hand, Delgadillo is getting to see her son in a new light that she never thought was possible and connecting emotionally more than ever.
“It’s life changing,” said Delgadillo, “It’s like giving me my child back. The child that I never knew.”
Jacel Delgadillo jokes with her son Bruno while his nurse Barbara Hernandez carries him around Delgadillo’s living room. Before introducing medical cannabis into Bruno’s treatment, he lived mostly in a vegetative state. “I honestly thought before that he didn’t know I was his mom. I feel like he knows now,” said Delgadillo. (Scott McIntyre for Leafly)
Jacel Delgadillo portions out a new CBD and THC combination oil she received from a dispensary. (Scott McIntyre for Leafly)
Bruno Stillo peers out the window of his family’s home in Miami, Fla. on Wednesday, May 1, 2019. Bruno has become more alert and aware of his surroundings since he’s been able to have medical cannabis as part of his treatment for Dravet syndrome. (Scott McIntyre for Leafly)
Jacel Delgadillo gives her son Bruno a new CBD and THC combination oil. Since Amendment 2 has passed, Delgadillo has received THC and CBD products from various dispensaries for Bruno to try with his treatment, which she will only give him if she knows the dosage and has done her research. (Scott McIntyre for Leafly)
Jacel Delgadillo, right, and nurse Barbara Hernandez position Bruno Stillo in his standing chair to eat at their home in Miami, Fla. on Wednesday, May 1, 2019. Bruno’s therapists were hesitant at first about Delgadillo getting a standing chair for Bruno, but one was ordered after Bruno made progress in his therapy sessions. There are also future plans for Bruno to get an activity chair and a walker. (Scott McIntyre for Leafly)
A photo from Christmas 2017 showing Bruno Stillo standing alongside his sister Angelene hangs in the family’s living room in Miami, Fla. The photo is special to Jacel Delgadillo because it is one of the first photos of Bruno standing in his life. “That was a huge success for us. That was like winning the lottery for us,” said Delgadillo. (Scott McIntyre for Leafly)
Delgadillo is working with the Make-A-Wish Foundation to work on widening spaces in parts of her home to make it more accessible for Bruno and his caregivers. (Scott McIntyre for Leafly)
Yesenia Alfonso works with Bruno Stillo during an occupational therapy session while Jacel Delgadillo, top, and Bruno’s nurse Barbara Hernandez look on in Miami, Fla. on Wednesday, May 1, 2019. (Scott McIntyre for Leafly)
Yesenia Alfonso takes small steps with Bruno Stillo during an occupational therapy session alongside his mother Jacel Delgadillo in Miami, Fla. on Wednesday, May 1, 2019. Delgadillo and Bruno’s therapist’s goals from the beginning were for him to crawl, sit on his own, and for him to stand. Now, he’s able to do all of it. (Scott McIntyre for Leafly)
Jacel Delgadillo gives Bruno Stillo a spray from one of his THC oil sprays during a speech therapy session in Miami, Fla. on Wednesday, May 1, 2019. Delgadillo keeps the THC oil spray handy if Bruno becomes uncomfortable or has any sort of aches or pains. (Scott McIntyre for Leafly)
Bruno Stillo looks up at flying bubbles during a speech therapy session. Bruno’s therapists have been able to advance his sessions to more attention-spanning activities with his improvement in the past two and a half years. (Scott McIntyre for Leafly)
Standing with her son was something that Delgadillo couldn’t do before being able to use medical cannabis as part of his treatment for Dravet syndrome. Bruno was barely mobile and would experience up to 300 seizures a day at its worst. Now, through various forms of therapy and using medical cannabis oils and sprays, he’s become more alert and mobile.“I honestly thought we were never going to get there,” said Delgadillo about Bruno’s progress. (Scott McIntyre for Leafly)