Makenzie Yovanovich was born with big brown eyes and a sweet disposition, but there was something about her tiny stature that had her parents worried.
“She was sort of floppy, even for a newborn,” said Jennifer, Makenzie’s mom. “We could tell something wasn’t right so doctors started testing her right away to figure out how we could help her.”
Test after test, specialist after specialist still didn’t yield a confirmed diagnosis.
As Makenzie got bigger, problems persisted.
“She didn’t make any of her milestones – holding up her head, rolling over, sitting up – but she did take to walking, which we couldn’t believe,” Jennifer said.
Finally, 3 years later, the Yovanovich’s got an accurate diagnosis. Makenzie had a rare form of congenital muscular dystrophy called Bethlem myopathy. The disorder, by its nature, causes weakness and muscle wasting, primarily in the skeletal or voluntary muscles such as arms and legs.
Makenzie immediately started occupational and physical therapy at Akron Children’s Hospital. In 2013, part of Makenzie’s therapy went from ordinary to extraordinary thanks to the hospital’s expressive therapy program and Dance Unlimited.
“Makenzie would beg me to let her take a dance class,” said Jennifer. “I thought it was impossible because of her disability, but it broke my heart to tell her that. Dance Unlimited was a great discovery for Makenzie.”
Once a week, Makenzie attends dance class at the hospital, which is actually part of her physical therapy. All of the children in Dance Unlimited have special needs and are assisted by volunteers and therapists.
“The social interactions Makenzie has due to the program have helped her tremendously,” Jennifer said. “Every one of the kids in the class has different abilities and that’s what makes it so great…When Makenzie gets out there (on stage) she shines.”
Even with therapy, muscular dystrophy causes Makenzie’s muscles to weaken, fatigue easily and experience pain. In November 2014, Makenzie lost her ability to walk.
“Dance Unlimited didn’t drop Makenzie from the routines because of her wheelchair. Rather the instructor, Kelly Lightfoot, went to a seminar to learn new techniques to incorporate her wheelchair in the routines. How awesome is that?,” said Jennifer. “Kelly’s training will not only help Makenzie, but also other kids in wheelchairs down the road. We’re just so thankful.”
Makenzie is a happy girl and makes the most of the muscles and strength she does have.
“She’s busy – she does therapy at school and at home, she rides horses, dances and is very social,” Jennifer said. “She’s always smiling and doesn’t let it (MD) slow her down.”
Be sure to tune in to 98.1 KDD Feb. 9-11 to hear more inspiring patient stories during the 2017 “Have a Heart, Do Your Part” Radiothon broadcasting live from Akron Children’s. Click here to make a donation or text KDD to 41444 and donate right from your smartphone.