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A one-day exhibition illuminates the world of untreatable pediatric epilepsy and other disorders, plus art in unexpected places and more local arts news and events
“Right when doctors were telling us there was no alternative, this new alternative showed up,” said local pediatric cannabis advocate Allison Ray Benavides, whose son, Robby, was diagnosed in 2013 with intractable epilepsy — i.e., seizures that were not reduced by medicine. News of the surprising effect of cannabis products on pediatric patients was just starting to emerge — sometimes dramatic reductions in the number of seizures seen each day — and Benavides found the timing to be serendipitous.
For Benavides, that alternative is Charlotte’s Web, a high-CBD, low-THC strain of cannabis named after Charlotte Figi, a Dravet syndrome patient featured in the 2013 CNN documentary “Weed.” It’s a rare, serious and untreatable form of epilepsy that develops in infancy.
Several states away, before “Weed” was filmed, Colorado-based photographer and journalist Nichole Montanez was already paying attention to Figi. Her niece had recently been diagnosed with the same disease, and for Montanez and her family, the future felt bleak. Her niece’s development was suffering at the hands of her disease, and she received a G-tube because she was no longer eating, Montanez said it was a wake-up call. The medicine was not going to help, and they had to face the possibility that they could lose her.
At the time, Montanez had recently been laid off from her newsroom art job and started work on freelance project about the Figi family, who also lived in Colorado. She photographed Figi, and during one session, Montanez witnessed a simple scene that gave her hope.
“One of those times that I was there, Charlotte was eating. And she had been tube-fed,” said Montanez, who described herself as a skeptic back then, assuming medicinal uses of weed were just “excuses to get high.” She realized she wanted Fiji’s progress for her own niece. “That’s when I became a believer, in that moment, just sitting there watching her have lunch.”
In the summer of 2013, Montanez then set out to put a new face on cannabis. She wanted to tell the stories of kids impacted by grim and untreatable diseases who saw progress or greater quality of life with medicinal cannabis. “If we show people these kids, how could they say no to that?”
She started going to family support groups and reaching out across online support groups. She thought she’d end up with a few dozen portraits and do a few restaurant or cafe shows in Colorado, but the project blew up.
“The families kept coming, and I kept photographing the kids,” Montanez said.
Over the last five years, Montanez said she has taken portraits of over 280 pediatric patients using medicinal cannabis.
“The Face of Cannabis,” Montanez’s photography exhibition held on Saturday only at Barrio Logan’s La Bodega gallery, displays a large-scale installation of 105 portraits printed on metal tiles, clipped together to be one massive, impactful hanging. Throughout the gallery, other documentary-style shots will be displayed from Montanez’s sessions with the children. The exhibition runs from 5-10 p.m.
Benavides’ son Robby is featured in the exhibition, along with several other San Diego children.
Benavides thinks that telling these children’s stories is important, particularly in San Diego. “From day one, those of us at our local ground zero have been organizing, sharing our wisdom with each other and collectively pushing our children’s providers to recognize what we are doing and support us, from Rady Children’s Hospital to the Regional Center to CPS to our schools,” said Benavides. “We’ve definitely changed San Diego for the better for the pediatric patients coming after us.”
And in telling these stories visually, through Montanez’s photography, Benavides thinks that the impact will be significant, allowing not just raw and vulnerable experiences to be shared with the community, but also heralding a reframed public perception of cannabis. “The recreational market has the suffering of sick children to thank for their new conveniences,” Benavides said.
The newly legal recreational market, however, has had a negative impact on medicinal use for pediatric patient families like Benavides and other San Diegans. Changes in availability, cost and insurance coverage have brought new (or in some cases, long-familiar) challenges to the families of kids with life-threatening diseases.
“It was always just about the right to try something that might be lifesaving or just make their life a little bit better,” said Montanez. “It’s not true that everyone has access.”