The New Milford girl who walks — and dances — over arthritis

Hi everyone,

Rose Schuette might not be able to tell you how many kids in Connecticut have juvenile arthritis.

She might not be able to give you the correct spelling of Methotrexate, the name of her arthritis medicine.

But ask this 6-year-old New Milford girl how many fish live in her family’s tank and the answer is swift and succinct.

“Thirty-seven,” Rose replies, her smile racing straight toward her dolphin earrings.

Like most kids her age, Rose Schuette has plenty to do in her spare time, including counting fish.

“I like to play with my dolls a lot and I like to dance,” she said. “I like to ride my bike, too.”

But unlike her first-grade friends, Rose’s spare time also includes living with joint pain and stiffness, and living with the threat of eye damage from arthritis down the road.

“A lot of kids ask me what arthritis is,” Rose said Wednesday. “I tell them it’s pain in my body.”

On Sunday morning, Rose will spread the word some more at the 2012 Arthritis Walk Danbury at the O’Neill Center at Western Connecticut State University. Registration starts at 9 and the walk begins at 10.

Rose will walk in this year’s event with her parents, Alice and Michael Schuette, and her sister, Grace. The family cat, Desdemona — yes, that Desdemona, the beautiful, ill-fated bride from Shakespeare’s Othello — will stay home.

“Every year, the walk seems to get bigger with more people and more booths,” Alice Schuette said. “It’s good for Rose to see there are other kids with arthritis. But it’s also good for my husband and I to connect with other parents.”

Rose is one of four ambassadors who were chosen for this year’s Arthritis Walk.

The others are Ryan Rizzo of Bethel, a 17-year-old junior at Immaculate High School in Danbury; Sara Matte, a 12-year-old student at Reed Intermediate School in Newtown; and Peter Serencsics of Bethel, the safety director at the Rizzo Companies in Danbury.

“Nobody really understands what the kids go through and what the families go through other than the people actually going through it,” Alice Schuette said.

“It’s kind of like when you’re a kid in science class learning about space for the first time,” Schuette went on. “You think, ‘No, it’s got to have an end. Everything has an end.’ But space doesn’t end. It just keeps going, just like JRA (juvenile rheumatoid arthritis). It’s a chronic illness.”

For Rose, there used to be weekly injections of Methotrexate, the shots that always seemed to draw tears, and occasionally, a drop or two of blood. Now, Rose takes a few Methotrexate tablets each week instead.

Often times, even sitting “criss-cross applesauce” can be painful for Rose, the girl with tiny freckles the color of brown sugar and dimples to match.

“It really hurts my legs, mostly my ankles and behind my knees,” Rose said. “Sometimes in the middle of the day, my teacher (Diane Smith) lets me stretch out my legs.”

Rose’s 9-year-old sister, Grace, sums it up like this: “I know it hurts her and I know she doesn’t like to take the medicine. I just wish I could help her.”

It’s been that way for the Schuette family ever since Rose was 10 months old. That’s when she was diagnosed with JRA and joined 3,400 kids in Connecticut with arthritis, according to the Arthritis Foundation.

“From the time she was born, Rosie had always been my happy-go-lucky baby,” Alice Schuette said. “But once she started scooting on the floor, I noticed that she was dragging her left leg.”

For more than a month, there were more questions — and doctor’s appointments — than answers. There was also Rosie’s ankle wrapped up in a cast for two weeks.

“By this time,” Alice Schuette said, “she was just sitting and crying and holding up her hands for me to pick her up. I remember saying at the time, I thought it might be arthritis. She was acting like her whole body hurt.”

Finally, a team of doctors at the Connecticut Children’s Medical Center in Hartford returned with a diagnosis: Little Rosie Schuette had JRA.

“When this happened to us, I was bitter. This was Rosie — our family, our baby,” Schuette said. “We didn’t know what was going on for so long. I learned it’s good to let other people know — if you have a feeling about something — to follow through with it and trust your instincts.”

On May 29, Rose Schuette will turn 7 years old. She doesn’t scoot anymore, of course.

These days, Rose prefers the choreography of modern dance, with its subtle elegance and its defiant hammer against the chains of arthritis.

Brian Koonz