Nicole Shannon, mother of a young son with a rare genetic disorder, uses visual art – and real roses – with genetic variants, as her subjects. Shannon’s motivation for her series of paintings, Rare Roses, is to convey “everything uniquely beautiful and worthy of love.” “(My son) Quinn who made it through the night, after he was born, was a miracle,” Shannon said. “We had an oxygen machine, a suction machine, and a nursing home when we were finally able to go home with him. I didn’t have time for art then.” Shannon is a married, Greenville resident and mother of two, as well as an artist and writer who has practiced goldsmithing since she was a teenager. Her 4-year-old son, Quinn, was diagnosed with a 263-gene deletion by the Greenwood Genetic Center, which serves as a pediatric patient. Quinn has what is known as a deletion of chromosome 6q. Art as meditation “When I started drawing these roses, I started with one, on paper, in a small form,” Shannon said. “…I was doing it at night, by the light of a book lamp, using a small watercolor tray and stuck in my lap. It was almost like therapy, as much as it was an art project. …As a parent with a child who has a genetic difference, I have connected with families Others have similar stories. We all encounter situations where our children are treated as “less than.” … Why aren’t all humans treated like humans?” Shannon said roses are respected in nearly every culture. “They used to represent beauty, love, value and importance,” she said. “Roses are living things. I was sure they had genetic variants. So, I reached out to the botanists and got amazing pictures of really amazing roses. When I got to 12 paintings, I thought, OK, I have a dozen roses but I don’t know what to do,” Shannon said. them.” Later, her husband Brendan suggested she turn the paintings into a relatively new art form – NFTs – or non-fungible tokens. These unique pieces of digital art are, essentially, bits of code that make themselves art and cannot be replicated. NFTs can represent real-world items like artwork. “It was a way to get them out,” Shannon said. I thought, ‘Maybe I need to do something else with them.’ Shannon turned to the Greenwood Genetic Center, which diagnosed Quinn as a venue to showcase her art. “Finding out at 20 weeks pregnant with my son that he might have a genetic difference,” Shannon said. Appear in my medical care. I didn’t panic. I personally believe in my faith. I was worried, but I didn’t panic. His genetic difference was out of my control, but I continued to eat well and rest while I was a praying person, so I prayed. I wasn’t freaking out, but my doctors freaked out. “The first place I felt hopeful was the Greenwood Genetics Center,” Shannon said. “It was after an emergency C-section birth and everything happened very quickly. Quinn was delivered on October 26, 2018. Doctors at GGC gave Shannon a booklet detailing the stories of other children with large genetic deletions. “We also linked the Greenwood Genetic Center to a support group,” Shannon said. “I went to the site for this support group and saw these pictures of little kids – standing and smiling with a feeding tube and playing with the spray. It was a little kid. … I felt a relief when I saw a little kid, not just a problem.” Photos of these babies inspired Shannon to make a collage that she shared with others in the NICU after the birth of her son. “I wanted others to see my child as a little one,” she said. “…He has already reached milestones that many thought he wouldn’t. The fact that he says the words is huge, like eating pureed food and drinking from a straw….He can pull off his therapy ladder. He still shows us what he is capable of. We We let him show us.” Shannon said the networks enabled her to connect with other families who had children with “unique DNA.” She created an Instagram account detailing Quinn’s progress: instagram.com/ourmightyquinn/ Shannon, a native of New York State, studied art at SUNY New Paltz and Savannah College of Art and Design. She has worked professionally as a goldsmith, sculptor, fashion designer, writer, art educator, user experience engineer, product developer, and mindset trainer. She is the founder of Create Potential, an educational institute that focuses on the ability to be creative.
Nicole Shannon, mother of a young son with a rare genetic disorder, uses visual art – and real roses – with genetic variants, as her subjects.
Call St. Claire Donaghy at 864-943-2518.
Call St. Claire Donaghy at 864-943-2518.