While recovering from a reconstructive operation in 2017, La Follette High School alum, Krystyn Jones spent most of her four month stay in the hospital after the surgery reflecting on her lifelong journey with the medical condition spina bifida, while thinking of inspirational ways to empower other young people with disabilities through creative arts, literacy and music.
“Living with spina bifida and scoliosis hasn’t been easy,” Krystyn recalled. “I’ve had about 13 surgeries over the years, spending a lot of time in and out of hospitals. After the most recent surgery on my back and leg, I knew that I needed to tell my story. I knew that I wanted to send a message of love and encouragement to kids with special needs.”
That’s when Krystyn decided she would motivate young people through visual storytelling, publishing a children’s book about living with spina bifida called, Wonderfully Made.
“My motivation for writing the book was to show children that their disability or medical condition do not define them as a person,” Krsytyn said. “You are uniquely and wonderfully made and can live freely without limitations knowing you are not a burden to society or anyone.”
The book, which features Krystyn as the main character, is a story about perseverance, empathy and determination.
In the book, young Krystyn experiences headaches, lower back and muscular pain. When she goes to the hospital for tests, her doctors reveal she must have surgery. While Krystn was reluctant to have the operation done, the emotional support she received from her family, friends and hospital staff reassured her. The operation was successful and she returned to school to share her story with her classmates.
“I had my first surgery when I was just a week old,” said Krystyn. “With spina bifida, my spinal cord was twisted and I was born with an opening in my back. Although I don’t have much feeling or control on the left side of my body, I can still walk. I’m not wheelchair bound and I can do everything independently.”
Before publishing the book, Wonderfully Made, Krystyn founded the Create a Smile campaign, traveling to children’s hospitals across the country for motivational speaking and performing arts activities for children with special needs. Some of the hospitals Krystyn toured include St. Jude Children's Hospital in Memphis, the Shriners Children's Hospital in Chicago and the Minnesota Children's Hospital in Minneapolis.
“I started Krsytyn’s Create a Smile tour because I wanted to reach children in person. I wanted to show kids that I can relate to them and that I am an example of someone who is thriving despite living with a disability,” said Krystyn. “I can do anything I set my mind to, and so can they. The kids need to see an example of someone like me living their dreams.”
Krystyn is indeed thriving and accomplishing all the goals she’s set out to achieve. At 20 years old, she’s a sophomore at Clark Atlanta University, a historically Black university in Atlanta, Georgia. She’s majoring in biology pre-med with professional aspirations of being a pediatric nurse.
“I strive to be in the medical field because the doctors and nurses who have helped me and supported me over the years are like family to me,” Krystyn explained. “I know how much nursing staff means to young patients, and I want to make that same impact on kids.”
While Krystyn attends Clark Atlanta University classes online due to COVID-19, she’s still a part of the MMSD family working part time every day for Madison School and Community Recreation (MSCR) at Frank Allis Elementary School assisting students in person with virtual learning.
“I enjoy working at Frank Allis because I understand how isolated the children are feeling because of the pandemic. Helping them through this crisis brings me so much joy,” said Krystyn.
Opportunities to connect with children in person have slowed down slightly because of the pandemic, but not totally. Since publishing Wonderfully Made in 2019, she has participated in virtual visits with various children’s hospitals. Madison Public Library has also reached out to Krystyn for virtual readings of her book, and she participated in MMSD’s Read Your Heart Out this year.
The Music Theater of Madison has partnered with Krystyn to write a second children’s book with plans to turn the piece into a musical for kids. Krystyn’s gearing up for her spring book tour scheduled in March to promote her book in libraries, schools and hospitals across Wisconsin and in Oklahoma, Kentucky and North Carolina.
“I don’t plan on stopping anytime soon,” said Krystyn. “I’m going to always be an advocate for kids with disabilities because I know what it’s like to feel like you can’t do something or you’re not good enough. I want to be a mentor who motivates children to follow their heart and follow their dreams!”
-Marlita Bevenue, MMSD Communications