Tiffin teen with 'brittle bone' disease takes center stage

CORALVILLE - The evil sea witch cackles as she glides through the water, having just taken the voice of the mermaid princess in her scheme to overthrow the underwater king.

Mary Kate Meade, the 16-year-old from Tiffin playing Ursula in a local production of Disney's “The Little Mermaid Jr.,” glides across the stage of the Coralville Center for the Performing Arts during that act.

Mary Kate has been in a wheelchair since she was a toddler because of a congenital disorder that causes her bones to break easily. While she has participated in shows and talent contests before, she has never had as big a role as Ursula.

“I think it's going to be really good,” Mary Kate said before a dress rehearsal Wednesday to prep for the musical's three-day run this weekend. “I know I'll be a little nervous, but it's just remembering that first line.”

Mary Kate is one of an estimated 50,000 Americans with osteogenesis imperfecta, also known as brittle bone disease. She has had dozens of fractures.

Landing one of the featured roles in the “The Little Mermaid Jr.” production by the Young Footliters community theater group has let her participate in something a typical kid would do, her parents said.

“Sometimes people limit her without realizing what they're doing,” said Mary Kate's dad, Russ. “But the group of kids and the director and the crew - from the top down - treat her like one of the kids.”

Hereditary condition

Her mom, Carol, also has OI, as the disorder is often called, as do several of Carol's 12 brothers and sisters. Carol has a milder form, suffering about a half-dozen broken bones in her 47 years and more commonly dealing with muscle pulls.

Carol and Russ knew during the pregnancy their child could have it, too.

“Either way, you just make the decision and say ‘Let's go for it.' ... There's a 50-50 chance,” Carol said.

At 9 months, Mary Kate fell down some stairs and broke her femur and clavicle. The fall was severe enough it was not clear whether she had OI. Then she fractured the same bones a couple of months later. And again a couple of months after that, and they knew.

They tried braces and walkers, but Mary Kate kept getting injured.

Despite being in a wheelchair, the 16-year-old has had more than 50 fractures, primarily in her legs. Just last year she hit a pothole in her wheelchair exiting a high school and broke a femur.

“It's one of those things you can do something 50 times, and then the 51st time” it hurts her, Russ said.

Mary Kate has the moderate-to-severe type of OI, which includes skeletal deformities, said her Omaha-based doctor, Richard Lutz. Many of the preferred therapies were not available when she was an infant, and they work best when a patient is younger, he said.

With her lack of walking in her early years, Mary Kate's bones didn't get strong enough to bear weight. But just like anyone else, being active, in a safe way, makes her healthier, he said.

“Joints and muscles and bones that you don't use atrophy and get weaker,” Lutz said.

Mary Kate has regular aches and pains, particularly when she wakes. She has rods in each leg - her third set as she grows.

Living life

All of this has an effect on her school and social life. Still, she's on the Clear Creek Amana High School speech team and in choir.

And then there's theater. Ursula, she points out gleefully, is her first time playing a villain. She sings and moves around the stage, at times with help after pulling a back muscle a couple of weeks ago.

Mary Kate already had been resting more during the day to conserve strength for rehearsals, which cause more pain than normal.

“I'd do it for the show any day,” she said. “The amount of fun I have with the cast and crew is worth it.”

Some people with severe OI can fracture a bone so easily – even just by sneezing or twisting the wrong way – that they become homebodies, said Petra Harvey, health educator at the Osteogenesis Imperfecta Foundation.

“Any kind of (safe) social activities would be good as another type of support network,” Harvey said. “And surrounding yourself with people who respect your passions and encourage you to follow your dreams, of course that would be great.”

Young Footliters is a non-profit theater organization for youth in the Iowa City area. The Meades raved about how the organizers have treated Mary Kate, even consulting with the family on the set design for things like slopes and safety rails.

“Let me tell you, she earned that role,” said Meredith Lamb, managing director of the Young Footliters. “She is just naturally very gifted. She has a wonderful voice. She is a good actor.”

Lamb also said Mary Kate's wheelchair gave her movements a fluid, water-like quality on stage. And six of her tentacles are attached to the chair at different levels, making for a bigger look than they would otherwise have.

“The Little Mermaid Jr.” runs July 19 to July 21 for four shows total. Russ and Carol Meade will be at each one watching their only child.

“I'm just going to be one of those moms in the crowd saying, ‘Yep, that's my kid,' ” Carol said.