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College student Krystyn Jones uses her courageous lifelong battle with Spina Bifida to inspire young people

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Having been born with Spina Bifida and scoliosis, author, dancer, performer and college student Krystyn Jones has been no stranger to hospitals in her lifetime where she has had numerous surgeries to correct the defect. It’s been a long and arduous road, but Jones has long broken free of the limitations that come with Spina Bifida and has dedicated her life to helping other young people to do the same.

“I really want to encourage people who are living with spina bifada, or any kind of disability, to not let their disability stop them from feeling like they can’t do what other kids are doing,” Jones tells Madison365. “I don’t want it to limit them. I want them to use their disability as a power or some kind of motivation to do whatever they can in life.”

Although living with this condition has brought her to some lows, Jones says she has been determined not to let the condition define her as a person and that it has also helped her soar to new heights. She recently wrote the book “Wonderfully Made” to tell her real-life story about love, family and being brave, even when times are tough, “because she knows that she is wonderfully made.”

Spina Bifida is a condition that arises when there is an issue with the development of the neural tube, causing a gap in the unborn child’s spine. It can range from mild to severe and is determined by the size and location of the defect. Jones says that she is somewhere in the middle as far as severity.

When Jones was born, she immediately had surgery to correct the hole in her back. She would then developed meningitis which caused her to remain in the hospital for 10 weeks. After which, she says, she was told that she would be a paraplegic.

“When I was born they said that because of my Spina Bifada that I wouldn’t be able to walk, that I wouldn’t be able to use the bathroom on my own. I wouldn’t be able to jump rope,” Jones tells Madison365. “Some areas on my left side I don’t have sensations so I don’t feel and have much control.”

Krystyn Jones works on rehabilitation with the hospital staff.

Jones grew up going to Madison schools – Frank Allis Elementary School, Sennett and Wright Middle School, La Follette High School – and beyond coping with her disability, she had to face bullying students.

“I would say that middle school is probably my hardest time dealing with bullying and for accepting myself that I was different. Elementary school was when I started to realize that I was different but I didn’t really want to accept it,” she says. “In high school, I really accepted my disability and the challenges that came with it.”

Jones has had over 10 surgeries to repair her spinal cord as it often gets tangled and causes her to lose function in different areas. “Most of the surgeries were untethering my spinal cord. My last one was in 2017, a reconstruction foot surgery,” she says.

Jones knew that she wanted to help other young people going through this. Two years ago, she kicked off her “Create A Smile Tour” at St. Jude Children’s Research Hospital in Memphis, Tenn.

“This is a tour that goes to different children’s hospitals. I put on a performance and then I do arts and crafts with them which is usually like a glow-in-the-dark paint party,” she says. “I tell the children to ‘paint their own masterpiece.'”

Krystyn Jones at St. Jude’s Children’s Research Hospital in Memphis, Tennessee

Jones was also part of the local R&B duo Trend-N-Topic where she would speak to and perform for young patients throughout the country on a national concert tour visiting children’s hospitals.

“I used to sing and dance when I was in Trend-N-Topic. Basically, it was a group pushing positivity to kids through music,” Jones remembers. “We wanted to uplift kids and let them know that they can chase and achieve their dreams. Whatever they can put their mind to, they can do it if they want.”

Jones felt like she was reaching the kids, but she really wanted to do more. 

“I’m not somebody who really likes talking in front of people, but I was sitting with my mom after my surgery and I was telling her I wanted to do more but I wasn’t sure exactly what,” Jones says.

Krystyn Jones and her book “Wonderfully Made”

She came up with the idea to write the book “Wonderfully Made,” a book that shows kids with disabilities not to look at it as something bad, but something that is “unique.” It’s a book about overcoming adversity published by Faith Works.

“I’ve got a really good response from the book. The illustrations in the book have really caught people’s eye,” she says.

Jones is writing another book with the Madison Music Theater that will be a musical. 

“It’s another children’s book around children with disabilities. But with this book, it’s about changing their disabilities and making them into kind of like a superhero or like a superpower. That’s what I’m working on.”

She’s also getting ready to do a tour with the Black Children Book Fair this spring.

“It’s a book fair with African-American authors – people who wrote children’s books. This year, I‘ll be traveling to Kentucky, Oklahoma and North Carolina.”

One of Jones’s goals with all of his pursuits – writing, singing, performing, educating – is to let young people know that hospitals aren’t as scary as they may seem.

“I also want individuals living with chronic and life-threatening illnesses to not allow their uniqueness to be looked at as a disability and to know that they can achieve whatever dreams they set out to reach,” she says.

Jones is currently attending Clark Atlanta University and studying pre-med. She’s in Madison right now due to COVID-19 doing school virtually and has some impressive personal life goals herself. 

 “My goal is to a pediatric nurse or a surgeon. I’m trying to start nursing school next year,” she says. “I’m trying to figure out where I’m going for nursing school – either somewhere in Georgia or somewhere in Tennessee, maybe Tennessee State.”