Born Determined: 10-Year-Old Michigan Girl With Myotonic Dystrophy Defies Limits Every Day

myotonic dystrophy
Kayla living unlimited by running on the track

Fabiola and Matthew watched their daughter run one lap. Then two. Then three. Kayla rounded the same bend again and again, a look etched on her face that her parents knew well — determination.

All in all, the 10-year-old ran nine laps at the Grand Rapids, Mich., Juniors River Bank Run. Other kids may have run more, but to Kayla and her parents, those nine laps were a marathon. They were as big as beating Usain Bolt in the 100-meter.

Kayla was born with myotonic muscular dystrophy and a bilateral club foot, which means her foot is bent out of shape.

“They told us before she was never going to be able to walk or anything,” says her dad, Matthew. “With the bilateral club foot and the myotonic dystrophy being mixed with that, they did not think they would ever get her to walk. Now she’s walking, dancing, having lots of fun on her feet.”

That’s just how Kayla is. She continually defies the odds, undeterred by myotonic dystrophy and has fun while doing it.

Kayla enjoying a day with her family

She swims every chance she gets. She dances every chance she gets, usually all around the house. She even rode a bicycle built for two with her family while on vacation. She loves gym class — especially when she gets to play soccer and basketball — and is a social butterfly.

The fourth-grader also works hard. She’s incredibly determined to do things on her own, including getting dressed in the morning, which can be tough for the girl.

myotonic dystrophy
Kayla enjoys many activities, including swimming and playing outside

“We have six kids and they can get done in five minutes, get dressed in the morning or something,” says her mom, Fabiola. “She takes about 40 minutes to get ready, 45 minutes sometimes. But if anyone tries to help her, she’s like, ‘No, I want to do it. I want to do it.’ She’s very determined to do things herself, which is a good quality.”

Kayla has had to wear leg braces, sometimes up to 22 hours a day, and eye patches to correct some vision problems. She wore both faithfully and didn’t complain. Kayla has been through five surgeries and will likely need more.

Kayla’s feet hurt a lot, but she pushes through to do the things that she wants to do — like the River Run.  That’s how she lives unlimited.

“She does things that blow our minds. She believes in herself,” Fabiola says. “She has this determination that pushes her beyond the limits that the doctors set on her.”

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