Southern Nebraska Register
A desire to “give back” motivated Sutton Kelly to create what she calls “wheelchair art.”
Sutton, a fourth-grader at St. Michael Grade School in Lincoln, was born with a rare neuromuscular disease called spinal muscular atrophy with respiratory distress type I. It is sometimes likened to ALS (Lou Gehrig’s disease) in children.
Sutton has never walked, and never will. She has used a wheelchair all her life. However, that has not dampened her spirit or diminished her outlook.
When Sutton was old enough for school there was no question where she would go – a Catholic school.
“When Sutton was born, I was a teacher at St. Michael School,” her mother Sasha, said. She and her husband Mike both attended Catholic grade schools and Pius X High School in Lincoln, and it was important to them that their children attend Catholic schools as well.
“St. Michael School makes me feel happy,” Sutton said. “I love how the other kids help me.”
“By the time Sutton was 2 years old, her care started to require more therapy, care and medical appointments, so we decided it was best that I stay home,” Sasha said.
Both Mike and Sasha knew sending Sutton to a Catholic school would require a lot of sacrifices from them, and from St. Michael school teachers and staff.
Special accommodations had to be made to the Suttons’ home and vehicle. In planning for new construction, St. Michael Parish made sure the school and church were accessible to all. Building features included strategically placed elevators, extra wide doors for motorized wheelchairs, additional grab bars and adult-size changing tables.
“As a previous teacher, I knew how much would go into making Sutton’s education possible,” Sasha said.” St. Michael School’s administration and staff has been more than accommodating.” She said the Kellys can’t imagine having Sutton at any other school.
Like other fourth-grade students, Sutton is inquisitive and wants to interact with her classmates. A student in Mr. Brad Florian’s class, Sutton partakes in most class instructions and events.
“Sutton’s presence in our school is a pure gift,” pastor Father Kenneth Borowiak said. “There are some things you just can’t learn from a book or an interactive screen. Sutton has taught all of our students that unconditional love, empathy, helping others, and joy are true and invaluable gifts,” he added.
Along with the blessings and joy that are a part of Sutton’s life there are opportunities and challenges. The GoShoutLove organization and St. Michael student council helped to provide Sutton a platform swing on the playground in 2019, in which she can play like the rest of the students.
Sutton’s disease is debilitative, which has caused her strength and stamina to diminish each year. She has had many surgeries to allow her to grow and maintain day-to-day functions. In 2018, she had metal rods surgically inserted in her back in order to maintain her posture.
When Sutton was younger, she was able to direct her wheelchair with a joystick. As her muscles began to atrophy and weaken, Madonna Rehabilitation Hospital in Lincoln helped secure a software program that allows Sutton to guide her wheelchair with the motion of her eyes.
The Knights of Columbus, at the request of the music teacher at St. Michael School, invested in a mouth-operated switch drum for Sutton, so she could participate independently in class and in music programs.
Father Borowiak said Sutton is an “icon” at St. Michael School. She and her service dog, Winston, are seen every day, tooling down the hallways in her motorized wheelchair. At the same time, he explained, as Sutton loses strength, it has become more and more challenging to keep up with her classmates and she feels a natural distance between them. She naturally misses out on playground time, sports, running freely at will and joining sleepovers.
Knowing this, Sutton’s parents recently encouraged her to start a new hobby. Since Sutton loves art, Mike and Sasha encouraged her to create what they call “wheelchair art.” Sasha said Sutton loves going to the store and picking out colors and accessories for her paintings.
After picking out a theme or an idea for a painting, Sasha uses a Cricut machine to print a stencil of her design. Then Mike and Sasha splatter and drizzle paint on a flat canvas or a poster board. Sutton then drives over the material, sometimes making 360-degree turns and spinning her wheelchair wheels to spread the paint.
Once Sutton is satisfied with the work, she tells her mom or dad if she wants any glitter, gold flakes, embellishments or splattered drops added until her masterpiece is complete.
In the process of creating wheelchair art, the Kellys said they have had incredible fun as a family – and in destroying their garage floor! After several months of creating art, the family realized they had too many pieces to keep, so they decided to host a booth at St. Michael craft fair this past fall.
Sutton helped create a business-type logo, “How We Roll Designs,” which comes from the family motto: “Jesus is my rock and that’s how I roll.” The family motto was created when Sutton participated in her first MDA walk at age 3.
The Kellys then used the theme to create a family YouTube channel, “How we Roll Kelly Family,” which documented their everyday life, as well as Sutton’s medical journey.
Courtesy photos. Continue reading below.
Perhaps the best reason for Sutton’s artwork journey is that, in addition to giving her a means of expression, it is also a way of saying thank you to all who have helped her in her journey. In her desire to give back, Sutton decided to give a portion of the profits from her art to Make a Wish Nebraska. It was this organization which granted Sutton a wish of a voice-activated theater when she was 4 years old.
“I love making wheelchair art because it is fun and I can give them to others,” Sutton said.
