Kelly Lyons of Carmel recently became one of two recipients of the $1,000 Brandon Gruber Arts Scholarship, presented by the National Down Syndrome Society. It will help her continue to pursue her career goals, which are in reach after spending the first two decades of her life battling chronic conditions and frequent hospitalizations.
Currently a student at Same as U, a Noblesville nonprofit that offers a college-like setting and continuing education programming for young adults with developmental disabilities, Lyons, 21, plans to attend the Aveda Institute cosmetology school in Carmel and eventually earn a business degree from the University of Cincinnati in its UC CECH program for students with mild to moderate disabilities.
Sara MacGregor, education director and lead teacher at Same as U, described Kelly as an incredibly talented makeup artist.
“It’s always spot-on, often done to go along with a particular theme that she also is dressed to match,” MacGregor said. “One day she showed up at Same as U in Incredible Hulk makeup. Kelly is the only person who could make the Incredible Hulk look amazing.”
Kelly Lyons’ future looks bright, but that wasn’t always the case.
The daughter and youngest of three children of Dana and Robbin Lyons, Kelly Lyons was born five weeks premature and with Down syndrome, a genetic disorder that causes developmental and intellectual delays. Down syndrome occurs in approximately 1 of every 700 births in the U.S.
Kelly Lyons has battled other health issues, some related to Down syndrome. She was born with a blocked intestine, a club foot and twisted legs. At 19 months, she began treatment for leukemia that continued until around her fifth birthday. Down syndrome children are 30 times more likely to develop pediatric leukemia than other children. Her legs continued to grow weaker as she got older; she endured surgeries on each leg and spent most of her middle school and high school years either bedridden or in a wheelchair.
And yet, when it came time to graduate from Lake Country Lutheran High School in Hartland, Wisc., Kelly Lyons insisted she would walk to the front of the class and lead her fellow graduates in prayer.
“It was a long walk, too,” Robbin Lyons said.
The family moved to Carmel, where Kelly Lyons was born, days after graduation.
As Kelly Lyons fought for her health, she worked with her family to give back to others. She was one of the earliest patients at St. Vincent Children’s Hospital, and during that time she and her family started Kelly’s Upside Down Ball, an organization that aims to benefit families facing dual diagnoses of Down syndrome and cancer. She has been a tireless advocate for those with Down syndrome, making an annual trip to Washington, D.C., to lobby Congress. Having strengthened her legs through rehabilitation and walking the Monon Trail, she operates a dog-walking business, Kelly’s Kritters.
“I really like to be busy a lot,” Kelly Lyons said. “I like helping my mom and dad a lot.”
She became interested in makeup after receiving her first kit, a toy one, when she was 2 years old. She had always shown an inclination for art, her mother said, and each face was a blank canvas. She was on the makeup team for her middle school theater group. Toward the end of middle school, she was bedridden, which coincided with the time she and her friends started to wear makeup.
She polished her skills by observing older sister Regan (now 25; they have a brother, Reed, 26) and by watching a steady stream of YouTube makeup tutorials. Kelly recently has gotten into scarier makeup and has shown an interest in latex. Her mother says she has thousands of dollars of makeup supplies, including paper makeup sheets and practice mannequins.
“Let me just tell you, she would leave those all over the house,” Robbin Lyons said with a laugh.
As Kelly Lyons’ prepare for her next phase of life, her mother believes it’s time for her to shine yet again.
“Kelly’s pretty ready to ditch us and live independently,” Robbin Lyons said.
‘Kelly opened that door’
Support and resources for families with a child with Down syndrome have improved vastly in the lifetime of Kelly Lyons, a 21-year-old Carmel woman born with the genetic disorder.
She and her family have worked tirelessly to make sure that’s the case.
Kelly and her mother, Robbin Lyons, have long advocated for those affected by Down syndrome, making an annual trip to Washington, D.C., to lobby Congress for more help. They started Kelly’s Upside Down Ball to raise money and awareness when Kelly was a patient at the then-new St. Vincent Children’s Hospital, partnering with Down Syndrome Indiana to organize a fundraiser featuring Indianapolis-based music group Jayne Bond and the Pink Martinis. Each March 21, World Down Syndrome Day, Kelly has passed out peeps, calling them “Peeps for her peeps.”
When Kelly Lyons started receiving treatments for leukemia at 19 months, the prognosis was not great and resources were limited. But, in the early 2000s, she had a better chance of beating leukemia than others before her.
“I really thought I was going to lose her,” Robbin Lyons said. “Had she been born 10 years earlier, they would just send those kids home.”
The Lyons’ were determined to improve the outlook for Down syndrome children with cancer and their families.
“We just kept talking louder, getting the word out that Down syndrome children survive this cancer,” Robbin Lyons said. “There’s a ton of support out there now. Things have really come a long way. Kelly opened that door.”