10-year-old Carter Stacey, who suffers from reactive arthritis, spends time practicing with the Lawrence Aquahawks last week. The swimming is therapeutic for Carter, and lets her compete just like any other child, her mother says.

Looking back, it all makes sense.

Ten-year-old Carter Stacey’s handwriting was awful. The Quail Run fourth-grader couldn’t sit still during class. In fact, she was so antsy, she was almost diagnosed with attention-deficit disorder.

“I get it now,” her mom, Tracy Ford Stacey said, after her daughter was diagnosed with reactive arthritis, a type of arthritis that develops in response to an infection in another part of the body. “She couldn’t hold a pencil or sit still because it physically hurt.”

When Carter started complaining at a young age about knee, wrist or other joint pain, her parents just brushed it off as “growing pains.”

“It’s a horrible feeling to know that for so many years your child was in pain, and we didn’t do anything about it,” Stacey said. “We could have done so much more.”

Now the Lawrence family is taking steps to make sure people are aware the disease, which is commonly associated with older people. This type of arthritis also affects hundreds of thousands of children every year in the United States. About 3,000 children in Kansas alone have some form of juvenile arthritis.

Carter realized she wasn’t alone earlier this month when she attended the Arthritis Foundation’s “Advocacy and Kid’s Summit” in Washington, D.C.

She was selected to represent the state after being named the organization’s Kansas Ambassador.

While in the nation’s capital, Carter met with members of Congress to put a face to a disease that not many people know about.

“We had to talk to them about what arthritis has done, how bad it is, and that kids get it too, not just grown-ups,” she said.

The Staceys and other families who attended the summit are urging lawmakers to pass the Arthritis Prevention, Control and Cure Act of 2009.

The bill would provide funding for research and the prevention of juvenile arthritis. It also creates a loan repayment program to address the critical shortage of pediatric rheumatologists in the country. Stacey said there is currently only one pediatric rheumatologist for the entire state of Kansas, and that doctor is approaching retirement age.

“Something needs to be done,” Stacey said. “To ask (my husband) and I to cross our fingers in this day and age, it’s crazy. It doesn’t make any sense. We need to have some more funding for arthritis. We need people to know that this is a disease that’s affecting our children, and as parents we’ve got to take care of them. This is something that needs to be taken care of now.”

The Staceys don’t know what the future holds for Carter. They’re hopeful her arthritis will go into remission. Since her diagnosis in December 2007, she’s learned how to better control the pain.

“It feels like there is a rock in there pounding on my joints,” Carter said. “I’m mostly used to it, but I get upset sometimes.”

But as the fourth-grader hits the pool for her nightly practice with the Aquahawks, she shows no signs that she’s letting the disease slow her down.

The swimming has eliminated the need for her to attend weekly physical therapy sessions.

“It’s nice because she’s out there working on her disease,” her mom said. “It’s making her feel better, yet she’s able to be a normal child, just swimming with the swim team. Just to see her place is unbelievable to us.”