Krystyn Jones stands poised to assist as her mother, Andrea Jones, tinkers with audio equipment in the lobby of American Family Children’s Hospital. It’s a bitter cold January evening, so the area—lined with sunburst-style cafe tables that lead to a weekly free buffet dinner for patients and families—has just a handful of people cutting through. Some fill plates and return to their rooms, others stay for entertainment that regularly accompanies the meal.
Krystyn is tonight’s act. She and one other dancer will perform to motivational hip hop that Krystyn writes and composes under the name Trend N Topic. Under that moniker, she has participated in countless events and competitions for the past four years—Brat Fest, Dane County Fair, Juneteenth, Madison Hip Hop Awards, Chicago’s Black Women’s Expo and the list goes on reaching as far as Atlanta.
But tonight is her second performance as part of her Create A Smile Tour, a line up of performances at Children’s Hospitals across America that she has written and choreographed to bring hope to hospital-bound children.
Before she starts, Krystyn briefly tells her own story, bringing into focus why she is an inarguably exceptional young woman.
“Hi Everyone, my name is Krystyn Jones,” she says over a microphone headset. “I’m 18 years old and a senior at La Follette High School. I’m also a spina bifida and scoliosis patient,” she says. “I’ll tell you a little bit about my journey—I’ve had 13 to 14 surgeries, most of them have been on my back to straighten my spinal cord. Today this is part of my Create a Smile Tour that takes me to different children’s hospitals because I feel like people, children, who sit in a hospital get forgotten, so I want to put a smile on kids.”
Krystyn, who’s had all but one surgery at American Family Children’s Hospital, tells the audience that she considers this hospital to be her second home. Then she begins performing a song that she calls, “Move That Way,” aptly named for how anyone who is told they can’t do something should respond. She then breaks into dance along with Davion Thomas, a La Follette 2018 graduate and Madison College student. The two put hip-hop to this important message:
“I know what I can do
if I put my to it,
move that way ….”
To the casual observer, Krystyn looks just another teen with a dream to dance. Her body shows faint signs of the trauma it’s been through, such as her left side having been rendered completely numb, as she moves the floor in perfect rhythm. She is a seemingly timid young woman with a gentle voice and a cautious manner of speaking, and her movements do not betray this.
One would never know that below the meek surface is a warrior.
“She has a desire to make sure other kids with special needs or chronic illnesses are not forgotten,” says her mother, Ms. Jones. “She encourages them to reach for their dreams and not allow anything or anyone to stop them. It’s a genuine selfless act.”
Standing up to Spina Bifida is not for wimps. It’s a birth defect that occurs when the spine and spinal cord don't form properly, and Krystyn has meningocele, the most common form. The surgeries Krystyn has undergone, in lay terms, prevent her back, spine and feet from twisting up, or untwist them. Recoveries can take weeks, disrupting her access to school, and they are often painful. Some have produced other unexpected issues—such as the nerve pain she endured after a surgery on a “tethered spine” that made touching her feet excruciating and walking impossible. Still, she maintains a 3.0 GPA.
“We know something is going wrong because she shuts down,” says Ms. Jones, her fiercest advocate. “She won’t eat, she comes home from school and goes straight to bed, then the headaches start, and she says her back is feeling weird. So when those things start triggering, we know something is going on with the spine.”
In 2017 Krystyn had the most major back correction to date and was given a 50-50 chance of ever walking again because her spine was so twisted and scarred. Afterward, she had no feeling from the waist down, an after effect that persists on her left side.
Then, two weeks following her recovery from that surgery, she had a major but successful one to straighten a foot and untangle painfully crossed toes that would throw her off balance and make her fall, often at school where other challenges lurk.
If it hasn’t been hard enough to navigate jammed hallways and inconvenient bathroom facilities, for most of Krystyn’s elementary school years she had to field questions from students who saw her more as a curiosity than a classmate. Middle school, too, lived up to its notoriously trying reputation for kids who seem at all "different."
Still, she persevered, but not without a tribe of support. Teachers at Frank Allis Elementary School unfalteringly sat at her side during hospital recoveries and kept her on track with homework and other accommodations once she returned to school. Family members, like her older sister Kaylahn, a 2015 La Follette graduate, is in her senior year studying pre-med at Hampton University in Virginia to become a neurologist. This career goal is an outgrowth of watching her sister’s struggle.
And then there are her parents, both Madison School employees—Ms. Jones is a multicultural student coordinator at James Madison Memorial High School and her father, Max Jones, is a security guard at La Follette, where he’s able to assist his daughter when necessary.
Plus there are dozens of supportive community members, like Gloria Ladson Billings who prays with Krystyn before each surgery.
"Krystyn Jones is the most courageous young woman I have ever met,” says Ms. Ladson-Billings. “She never let her physical challenges discourage her and more importantly she never let the insensitive and unkind words of a group of small-minded students keep her from pursuing her goals. Every time I had the opportunity to pray with her and her family before a surgery I told her she was my role model. She is the very embodiment of faith. I am convinced we are going to hear so much more from her as she heads off to college and continues her career goals."
This year Krystyn is deciding between two colleges acceptances: Tennessee State University, an historically Black College in Nashville, and Clark University in Atlanta, Georgia. She was also the recipient of the Outstanding Young Person Award, for the second time, and the Betty Franklin-Hammonds Scholarship at the Urban League’s Martin Luther King Youth Recognition Breakfast at Edgewood College. This Scholarship “rewards the outstanding graduating seniors en route to college, with special consideration of students who have overcome economic or social obstacles.
But perhaps Krystyn’s major accomplishment this year was the launch of her first Create A Smile Tour at the hospital she holds in the highest esteem—St. Jude’s Children’s Hospital in Memphis, Tennessee. Getting there hasn’t been easy, but her mother calls it “a dream come true.”.
“Krystyn has always put the wellbeing of others before herself,” says Ms. Jones. “This is why by any means necessary her father and I are going to support her, and make whatever sacrifices we have to in order to make her dreams come true. Her goal is to reach over 600 children before leaving for school, and I have confidence that she will exceed that number.”
– Pat Dillon