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HealthPolitics

Reviving Bruno: A Day in the Life of a 5-Year-Old Florida Cannabis Patient

November 1, 2016

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. (Scott McIntyre for Leafly)

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. By Scott McIntyre

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 at B&V Thera-Pro in Miami, FL on Friday, October 28, 2016. 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. (Scott McIntyre for Leafly)

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 during a therapy session at B&V Thera-Pro in Miami, FL on Friday, October 28, 2016. 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. By Scott McIntyre

Bruno Stillo shuffles along the floor as he exercises his crawling.

In between therapy sessions, Jacel Delgadillo shares a moment with her son Bruno Stillo in Miami, FL on Friday, October 28, 2016. Stillo suffers from Dravet syndrome, a rare and catastrophic form of intractable epilepsy that begins in infancy. At one time, he would experience 300 seizures a day. In 2014, Delgadillo began using cannabis oil for her son's seizures and has gone from mostly immobile and non-responsive to being able to crawl and respond to his surroundings. "We love to see how much he’s grown and how much he’s learned," said Delgadillo. By Scott McIntyre

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 paying her daughter's after school program in Miami, FL on before getting her kids ready for a Halloween event at the school. "Even though it's hectic, we're happy." (Scott McIntyre for Leafly)

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 Stillo'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. (Scott McIntyre for Leafly)

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 Stillo moves about in his playpen, his nurse Idania Gonzalez takes a brief rest while watching over him in their Miami, FL home on Friday, October 28, 2016. When his mother isn't watching over him, Gonzalez is always watching to make sure he's safe. (Scott McIntyre for Leafly)

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 Stillo is constantly looking at his surroundings. (Scott McIntyre for Leafly)

Throughout his day, Bruno is constantly looking at his surroundings.

While they were out at the Halloween event, Bruno became sick and threw up, so Jacel Delgadillo decided it was best for him to leave after she gave him his CBD medicine (cannabis oil) with the help of their nurse Idania Gonzalez at Angelene's school in Miami, FL on Friday, October 28, 2016. During social events, Delgadillo has to keep extra close watch on Bruno. (Scott McIntyre for Leafly)

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 Stillo plays with her brother Bruno in Miami, FL on Friday, October 28, 2016. Before he started using medical marijuana, Bruno did not act aware of the people in his life. "We love to see how much he's grown and learned," said Jacel Delgadillo. (Scott McIntyre for Leafly)

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.

Scott McIntyre's Bio Image

Scott McIntyre

Scott McIntyre is a South Florida-based independent photographer who focuses on documentary storytelling. His main focus has been finding the people, places, and ideas that make Florida unique. Scott was most recently a staff photographer at the Naples Daily News, where he was named Photographer of the Year (small markets) in NPPA's 2016 Best of Photojournalism Contest.

View Scott McIntyre's articles

  • Chris Voris

    No Hoosier should have to leave their home, their families, their friends to obtain a life changing medication! No one nowhere should have to leave their home, their family, their friends to obtain a life changing medication!

  • CajunAggie

    Thanks for that refreshing article.. Been following a young lady from Texas on FaceBook who had to move to Colorado after almost dying in Texas. She is one who also requires THC to be seizure free. She’s now well over a year seizure free and living the life of a normal kid, but still can’t go home. Sad. Those who would deny this to these kids are sick individuals. Especially when they demand that the children try all the crap the doctor can throw at them (seizure meds are very dangerous and some are not FDA approved, but used anyway). And if you are in Florida, please vote “YES”.

  • janey

    We gave our daughter who is severely retarded and physically handicapped the marijuana butter for 4 years. She never ate, hardly at all, since birth. It was terrible getting some food down her. After the butter she eats! meals! even though we have stopped the butter because of change of rules makes the butter harder to get and much more expensive. Apparently she found eating was good and now likes to do it. It only took 40 years and 4 years on marijuana butter. Hope it lasts!

    • Adude

      You can make your own butter.

  • Kathy Rankin

    great photos of the day of this young patient. thanks for sharing

  • MFP

    “Legalization” is a joke in all of the US States, but in the socialist republic of FL in particular.
    In FL you can expect to pay a doctor $200 to tell you what you already know, and
    get a medical MJ card that is good for 7 months and then you pay again (every 7 months). And don’t forget that
    the state gets a $75 fee on top of that. Then after all of that you can expect to pay about 400% more than the free market value
    for your medicine because the state again must get it’s blood money. Remember that only friends of the psychopaths in Tallahassee are allowed to grow your medicine. You certainly can not grow your own.

    The end of this is that only the economically well off can even consider this path for their medical needs.
    This like all of the other US states is not Legalization. Just new crimes, and new ways to steal your money. The turning of our God given rights into permissions from the state that we must purchase.

    How far do you think this would have gotten if we needed to pay for state permission slips to own and read a bible, or to have children?
    Americans need to wake the hell up and see what is happening to their rights in this country. The Constitution was written on hemp paper, and I am fairly confident that the founders would have killed the tyrants before seeking their permission to grow the hemp for that document.