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Boardman student with rare disease looks to the future
BOARDMAN
Kaitlin Windt
Video
Kaitlin Windt is graduating from Boardman HS. She has a disease which has kept her in a wheelchair but hasn't let that slow her down.
Most days for the last four years, Tom Ruggieri , Boardman High School band director, was greeted at lunchtime by a familiar question.
“Whatcha doin’?” Kaitlin Windt would ask.
Kaitlin, one of Ruggieri’s band students, would share her cranberry raisins with him, and the two would talk during the few minutes between lunch and band.
They’d talk about her extracurricular activities, and he’d tease her about dropping Goldfish crackers all over his floor.
In four years, however, they never discussed the disease that caused Kaitlin to rely on a wheelchair.
“Her daily visits to my office and countless conversations could easily have been about her wheelchairs, braces, doctor visits and limitations, but they never were,” said Ruggieri, who had made sure her use of a wheelchair would not stop her from playing flute in the marching band.
He compares Kaitlin’s attitude to that of his wife, who battled breast cancer.
“She has been kind of a hero to me much in the same way my wife is one,” he said. “As with Patti and cancer, it’s like they had a disease, but the disease never had them.”
THE DISEASE
The summer before she started fifth grade, Kaitlin was diagnosed with Friedreich’s ataxia, a rare, degenerative neuromuscular disorder.
The disease affects about 1 in 50,000 people in the U.S. Its symptoms differ from person to person, but can include vision impairment, hearing loss, scoliosis, diabetes, heart conditions, loss of coordination in the arms and legs, and more.
It’s a genetic disorder, and Kaitlin’s younger brother, Blake, also has it.
Despite Friedreich’s ataxia’s real impact on her and her family, Kaitlin gives it a footnote rather than its own story line when she talks about her high-school experience.
“It made it difficult to get around to classes and have teachers try and figure out how to help me, but I don’t think it’s affected me in what I can and can’t do, because I’m in marching band, and I have friends who don’t just look at the wheelchair,” said Kaitlin. “They look at me.”
NO LIMITATIONS
On an evening in February, Kaitlin was at the YMCA in Boardman for her weekly Leaders Club meeting. She was in charge of picking a devotional to read to the group.
She chose this one: “If you cannot do great things, do small things in a great way.”
It was a fitting choice, given how Kaitlin lives her life. Those who know her well said while people might see her wheelchair and assume she needs help, she has always been more interested in helping others.
She is “pretty much selfless,” said her mom, Chrissy Longley. “She looks at the world around her, and people around her, and she recognizes when other people need help, and she wants to be that person to help others. Whether it’s from physical disabilities or people who are being bullied or having learning disabilities, anything she sees that she feels is not right ... she just puts herself out there.”
“It makes you feel good, that ... she’s willing to help other people,” said her dad, Howard Windt. “But she’s been like that since she was little, even before the diagnosis.”
In high school, that meant devoting herself to volunteering. Kaitlin was actively involved in the YMCA Leaders Club and Meridian HealthCare’s PANDA Leaders Club, both of which involved extensive volunteer hours.
Kaitlin joined Leaders Club her sophomore year. For PANDA club, which educates students on topics such as bullying and drug use, she kept applying to be a youth staff member for the group’s camp for high-school students until she was accepted.
“The first time I met her she was pretty shy and quiet,” said Les Tabor, prevention educator and youth staff coordinator at Meridian. “Now, she is willing to speak up and say what she thinks. She’s really grown into a leader.”
On top of that, Kaitlin did marching band, is in National Honor Society and is graduating with a 3.8 GPA.
Friedreich’s ataxia has “definitely has not stopped her from doing just about everything she wants to do,” Longley said. “Despite her limitations as far as walking, she really hasn’t allowed that to put any limitations on her when to comes to her schooling or activities she’s involved in.”
LOOKING TO THE FUTURE
Today Kaitlin joins 301 of her classmates in graduating from Boardman High School.
Later this summer, she will head off to college. At Clarion University in Pennsylvania, she plans to double major in early-childhood education and special education.
She and her parents admit they’re a little nervous for her to leave home.
Her dad is concerned about the disruption to the honed routine they’ve developed over the years.
“There, you’re going to have to learn all over again. The routine here has been the same forever: You sit on the step. You put your braces on. Put your shoes on. You get to your chair,” he said.
Longley said she’s nervous the way most parents are when their child leaves home for the first time.
As for Kaitlin, she shyly admits she’s a little worried.
But she will carry with her the lesson she’s learned over the past several years: “Even with the wheelchair, if I work hard, and I believe I can do something, I can.”