Roselle girl's ultimate wish: to walk

Katelyn Bayne has been surprising everyone around her since she was an infant.

At 10 months old, the Roselle girl first shocked her parents, Rob and Lori Bayne, with a devastating development: she was diagnosed with a brain tumor called medulloblastoma.

In children like Katelyn, the cancer usually forms at the lower back of the brain in the cerebellum, which controls movement, balance and posture, according to the National Cancer Institute.

Surgeons immediately performed a delicate operation to remove the tumor. And baby Katelyn went through chemotherapy and radiation for the next 18 months of her life.

The treatments succeeded. Doctors proclaimed her tumor-free, a status she still holds today at 8 years old.

But Katelyn suffered developmental delays with her vision and hearing. Her parents also held her behind a year in preschool, which Lori Bayne says was a precaution. Academically, Katelyn caught up with her peers.

The only thing stopping her from keeping up completely, though, was her body. Because the cancer affected the area of the brain that controls movement and balance, Katelyn could not walk without a walker and leg braces.

And she couldn't get very far either.

"She would come home from school and would immediately take off her braces and crawl around on the floor," her mother said.

By last spring, not much seemed poised to change. Her family's insurance plan allowed them to enroll her in physical therapy at Easter Seals DuPage in Villa Park - but it restricted therapy to only one session every other week, stopping at a maximum 20 sessions per year.

Katelyn's family and her physical therapists knew it wasn't enough. So did her doctor.

And that's when he helped out to give Katelyn the choice of a lifetime.

The wish

Jessica Miller knows what children dream.

As the spokeswoman for Make-A-Wish Foundation of Illinois, she's seen children with terminal or life-threatening illnesses wish for glamorous trips, a chance to meet their favorite celebrities or even shopping sprees.

Every wish, Miller said, is unique to the child's personality and situation.

Still, when Katelyn Bayne's doctor recommended her for the program, it was Miller's turn for a surprise from the little girl.

"I wish to walk," Katelyn said plainly.

So Make-A-Wish officials formally interviewed Katelyn last May about her biggest dream, and she held steadfast in her goal.

She didn't want to see Miley Cyrus in concert as "Hannah Montana."

She wasn't interested in traveling to Disney World.

In hopes of keeping up on the playground with her sister Nicole, 10, and her brother, Alex, 5, (or even helping Mom at the grocery store when her hands are full with 5-month-old Gianna) Katelyn wanted, quite literally, to get on her feet.

"It's a pretty unusual wish, and I don't think we've had others like it in Illinois," Miller said.

But Make-A-Wish isn't in the business of magic, which means a quick fix for walking is impossible. Instead, the foundation granted the Bayne family approximately $15,000 worth of additional therapy at Easter Seals and enrolled Katelyn in the SuitAbility program.

SuitAbility is an intensive therapy that treats children with neuromuscular disabilities; it improves the weakness and deconditioning in muscles caused by limited range of motion and physical activity.

Rob and Lori Bayne said they knew immediately this wish would be life-altering.

"She could have chosen to go to a Hannah Montana concert or take a trip to Disney or something and she would have been happy for a night or one week," Lori Bayne said. "This is something that was going to benefit her forever."

One hundred steps

The adage about walking says you simply put one foot in front of the other.

For Katelyn, it's not so simple.

When she first started at Easter Seals in March 2007, before Make-A-Wish, Katelyn could stand for only 17 seconds without falling. Therapist Leslie Cuevas said Katelyn couldn't get up off the floor alone, either.

And though she had improved slightly with her regular physical therapy, everyone hoped the three-week SuitAbility program would be a jump start. According to Easter Seals tests, many children in SuitAbility make the same amount of progress that they typically achieve with one year of regular therapy.

To begin, therapists fitted Katelyn with a specific TheraSuit, a modification of a suit originally designed by Russian scientists to minimize the physical effects of weightlessness in outer space. The cosmonaut suit provided joint compression to trigger muscle activity, which diminished muscle weakening and loss of bone density. It also provided resistance to body movements, which helps maintain muscle mass.

The TheraSuit uses elastic cords - adjustable in length and tension - to accomplish similar effects with Katelyn.

"She's made great gains and she's one of those kids who really wanted to stay and do more," Cuevas said.

And so, to her family and therapists' delight, she did.

After finishing SuitAbility, Katelyn is now finishing six weeks of follow-up therapy with Cuevas and fellow therapists Emily Lauer, Laura Znajda and Josephine Hipolito. She will also continue with 16 additional sessions.

But Katelyn puts it in more realistic terms.

"When I started I did not think I could take 100 steps," she said. "Now I can."

Workhorse

The dream doesn't end at 100 steps, though.

Today, Cuevas says Katelyn can stand unassisted for five minutes. Her therapists also are working on her core strength to improve her balance and help her move on to activities. She already can kick a ball.

Nicole Bayne said her little sister can, simply, "do everything."

"She can go on the swing, climb up the ladder, slide down the slide - everything we do," Nicole said.

There's still work ahead, though, since leg braces are still essential and Katelyn's movements are slower than her peers'. Both Katelyn and her parents said the challenge doesn't frustrate her, because she's seen such stunning improvements since May.

Instead, she's more motivated than ever, still surprising her family with her dedication to her exercises.

"She's in therapy for four hours, we get home and even we are exhausted, but she still wants to keep going and asks to go on the treadmill," Lori Bayne said. "She's a little workhorse. She sees the progress and wants to keep it up."

To learn more

Make-A-Wish Illinois, 640 N. LaSalle Drive, Suite 280 Chicago, Illinois 60654 (800) 978-9474 www.wishes.org

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