“There’s a real interest in putting together registries for patients with juvenile inflammatory arthritis, and we’re trying to spearhead putting together more data on incidents and results of joint replacements in these patients,” he explains.

Colleen says that would be helpful for parents like her. “The information is not out there,” she says. “So it’s fortunate that there are not a lot of kids in this situation but frustrating for the ones that are.”

Before Caitlin was diagnosed with JRA at the age of 3, she was a tall child and doctors predicted she would grow to be about 5 feet 10 inches as an adult. Now her growth has slowed dramatically, to about one centimeter every two months. Her mother says Caitlin’s growth potential is likely limited long term due to a combination of joint inflammation, drug side effects and the hip replacement, which removed some of the growth potential at her hip growth plate.

But she is back on medications that for now have her arthritis under control. And this year she will lead her team, dubbed the Princess Parade, in the Orange County Arthritis Walk. It’s one of the top Arthritis Walk teams in the county and has raised more than $100,000 for the Arthritis Foundation. She is also the 2010 National Arthritis Walk Youth Honoree.

“I’m really excited about it. Especially with my new hip,” Caitlin says.

Facing the Future

More challenges likely lie ahead, however. Caitlin’s other hip, the right one, has started to hurt and her mom says that next summer she’ll likely need that hip replaced, too.

“We will do it sooner if she deteriorates quickly,” Colleen says. “We will not go back to the place we were before.”

For now, Caitlin is trying to enjoy just being a kid. That means indulging her love of shopping, the Jonas Brothers, the Twilight series and returning to the softball field.

“Before I had my hip replaced, they pulled me out of a lot of games and I had to have someone run for me,” she explains. “But I did a lot better after I got my hip replaced, and I was able to get back into it and not have a pinch runner,” she says. “So I’m starting again for the first time, and it feels really good.”

Looking ahead, she has dreams of being a fashion designer and holds out hope that one day, someone will find a cure for JRA.

“I’d tell other kids that have [JRA] to always keep your head up,” Caitlin says. “Someday they’re going to find a cure. So until then, keep your life going the way you want it to and you can find a way around obstacles in your life.”