5-year-old Charlotte uses her talking device at her home in Black Forest, Colorado, May, 2013. Charlotte suffers from Dravet Syndrome and was featured in the 2013 CNN documentary WEED with Dr. Sanjay Gupta. (Photo Nichole Montanez)
When Southern Colorado photographer Nichole Montanez started photographing children who could or are benefiting from medical cannabis or CBD she didn’t know exactly where the project would take her. But she knew it was a story she wanted to tell.
Montanez’s niece had her first seizure at almost four months old. That eventually led to the “Face of Cannabis” portrait project Montanez started showing in Colorado this year. She wants to take the installment across the country.
“At the time I was like, ‘how does anybody know what a seizure even is?’” she said of her niece, who is now 12.
The seizures persisted and Montanez’s niece, Hailey, was eventually diagnosed with Dravet Syndrome, a form of epilepsy that typically occurs within an infant’s first year of life, and the illness doesn’t respond to medication.
“We had never heard of it. It was very rare and, according to what we could find - there were only about 700 confirmed cases,” Montanez, a graphic designer and artist who works at the Colorado Springs Gazette, said. “A lot of doctors outside of neurology had never heard of it.”
The diagnosis led Montanez and her family to a support group and people who shared similar experiences with Dravet Syndrome, including fellow Colorado Springs residents Paige Figi and her daughter Charlotte.
The two are most widely known for “Charlotte’s Web,” a CBD strain that is low in THC and helps Charlotte and dozens of other patients to control seizures. Montanez became a believer in what medical cannabis and CBD could do when she visited Figi and Charlotte one night at their home for dinner.
“We sat down to eat and she (Charlotte) started eating and that was the moment for me because she had been tube fed,” Montanez said. “My niece had recently stopped self-feeding.”