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.
For Jacel
Delgadillo of Miami, Florida, having access to medical cannabis meant
having access to her son. Delgadillo’s 5-year-old son, Bruno ,
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, 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 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 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 and Bruno, documenting
their joys and struggles.
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