Meet Some Of The Young Heroes Advancing Marijuana As Medicine

By WeedMaps News' A.J. Herrington, provided exclusively to Benzinga Cannabis.

As the legalization of marijuana continues to spread state by state, and the rising industry along with the culture of weed continue to evolve, it can be easy to forget that much of the legalization movement owes much of its progress to people from underrepresented communities. 

One of those communities is made up of young patients with debilitating and terminal diseases who use cannabis to help treat their symptoms and conditions.  And a photography exhibition by a Colorado artist is making sure these young children and their parents aren't forgotten. 

“Faces of Cannabis” is a project that brings portraits of young medical marijuana patients to galleries across the country, highlighting the triumphs and struggles of kids who medicate with cannabis. The project began in 2013 by Nichole Montanez as a way to record the experiences of her niece Hailey, also known as Teapot, who began having seizures as an infant.

Teapot was diagnosed with Dravet syndrome, a rare form of epilepsy that can cause frequent and prolonged seizures daily. When Montanez heard about Charlotte Figi, another young girl with Dravet syndrome and one of Colorado's youngest medical marijuana patients, she arranged a visit with her family. Charlotte had been using a cannabis tincture made from a strain of cannabis high in cannabidiol (CBD) — later named “Charlotte's Web” after Figi — to treat the disease. When Montanez met Charlotte, she was amazed at the difference in the two girls.

Madeline was diagnosed with leukemia when she was 11 months old. After turning 2, she began having seizures. While her leukemia is in remission, Madeline was diagnosed with infantile spasms, and her epilepsy was diagnosed as a rare form, Lennox-Gastaut syndrome. Madeline and her family moved to Colorado, where access to cannabis to treat her seizures is legal. (Photo by Nichole Montanez)

While Teapot's condition had worsened to the point that she had to be nourished with a feeding tube, Charlotte was happily eating when Montanez visited. Soon, Teapot was also making progress with cannabis and Montanez became a member of Colorado's medical marijuana community. Before long, she was photographing other young patients, including many who had moved to Colorado because there were still no provisions for the medicinal use of cannabis in their home states. That's when she decided that her work could help advance the medical marijuana movement and the goals of the project came into focus.

"I wanted to put a new face on this and bring it to light and assist in changing hearts and minds and hopefully legislators," Montanez told Weedmaps News. 

Scope of Project Evolves

Montanez's original plan was to photograph the approximately 50 pediatric cannabis patients who lived in Colorado when she started. But as more kids in Colorado started using medical marijuana, the scope of the project expanded and she was soon traveling to other states to photograph more kids. Today, Montanez has taken more than 10,000 photographs for the project. Each exhibition includes an installation piece hung in the center of the space, surrounded by individual framed images. Because Montanez has photographed so many children, exhibits usually include young patients from the area.

The “Faces of Cannabis” series includes children with many different serious medical conditions that can be treated successfully with medical cannabis.

Scout suffered his first seizure at 10 months. Born with cortical dysplasia, which causes epilepsy as a result of a malformation of the brain, Scout was found to have a lesion on the right side of his brain, and later a cyst on the left side of his brain. He had surgery at age 3 to remove both. Scout and his family live in Idaho, where all forms of cannabis are prohibited. (Photo by Nichole Montanez)

Scout is from Idaho, where all forms of cannabis, including hemp, remain illegal. He began having seizures when he was 10 months old. After doctors discovered a lesion on the right side of his brain and a cyst on the left side of his brain, he underwent surgery to remove both at the age of three.

Noel is from Puerto Rico and was diagnosed with autism at age two before later being diagnosed with epilepsy that caused very aggressive seizures at age five. He has been taking high-CBD oil for three years and has been doing well with the medication. After Hurricane Maria in 2017, Noel and his mother, Ana, moved to Missouri, where a medical cannabis bill was passed the following year.

With nearly two-thirds of U.S. states legalizing some form of medical cannabis, Montanez said the intent of the “Faces of Cannabis” exhibition has shifted. She believes that the young patients and their families who shared their experiences with the world are largely responsible for the advancement of legal medical marijuana. And she wants to make sure these kids, who she considers heroes, are recognized for the sacrifices they have made.

Noel was diagnosed with autism and epilepsy. He and his mother lived in Puerto Rico, and after Hurricane Maria devastated the island in 2017, they moved to Missouri, which now has a medical cannabis program in place to help treat Noel with high-CBD oil. (Photo by Nichole Montanez)

"The goal is to keep the children at the forefront of the movement and prevent them from being put aside,” Montanez said. “I believe that they are responsible for most of the movement in the Legislature over the last few years and now that cannabis is going mainstream, I see a lot of different people sort of taking the lead on this and it makes me a little bit sad when this entire industry, in my opinion, was built on the backs of suffering children."

Young Stars Get a Chance to Shine

A recent showing of “Faces of Cannabis” at a gallery in San Diego was attended by several children who have been photographed for the project. Montanez says that the public exhibitions give the kids a chance to be the center of attention. And having the subjects of the photos present in the gallery enhances the experience for those who have come to see the show. Montanez says that she isn't even sure if the children in the exhibition are cognizant of the contribution they have made.

Caden suffered from a loss of consciousness and broken bones during a medically complicated birth. He began having infantile spasms shortly after birth. Caden has been diagnosed with Lennox-Gastaut syndrome, like Madeline, as well as autism and cerebral palsy. (Photo by Nichole Montanez)

 "But what they do know is that they're the stars and that they're special and when they walk in, it's theirs and that they belong,” Montanez said.

One of the stars of the San Diego installment of “Faces of Cannabis” is 9-year-old Robby Benavides, who was diagnosed with a seizure disorder known as Doose syndrome when he was 3, just as the potential for cannabis to treat epilepsy was becoming known. Robby's mother, Allison Ray Benavides, connected with the pediatric medical marijuana community in Colorado and arrangements were made to transport enough Charlotte's Web tincture for 20 kids to California, despite federal laws banning interstate transfers of cannabis.

After an initially difficult period of time during which adjustments to the dosage of his tincture and pharmaceutical medications were made, Robby began to respond to the new regimen. Today, he has been essentially seizure-free for five years. After Allison recently published a book about her family's experiences, she shared with Robby for the first time just how special a little boy he really is and what his life means for others.

“You've changed the world,” Benavides remembers telling her young son. “You don't just take this oil and it stops your seizures. You taking this oil means that now scientists have to honor and recognize this.”

“Faces of Cannabis” has shown six times in locations including Colorado, California, and Texas. The exhibition will be coming to galleries in Lowell, Massachusetts, and Fort Collins, Colorado, in 2020. Photographs from the series are also available in a hardcover book by Montanez that is available for purchase online via Amazon.

Feature image: Photographer Nichole Montanez's niece Hailey, nicknamed “Teapot,” exhibited seizures in infancy. She was diagnosed with Dravet syndrome, a severe form of epilepsy that appears in children before their first year. Montanez took her niece to meet Charlotte Figi, who also has Dravet syndrome but whose condition improved after taking a high-CBD tincture that would be named for her — Charlotte's Web. (Photo by Nichole Montanez)