Peters girl an honoree at event for arthritis

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Jennifer and Grant Carroll gave their daughter Maddie a toy horse, Barbie doll, sparkly shoes and a ballerina-themed swim party for her fourth birthday on Sunday.

What they wanted to give her was good health.

The Peters girl is one of nearly 12,000 children in Pennsylvania and 300,000 nationwide with juvenile arthritis, an umbrella term for a number of childhood diseases affecting the joints and musculoskeletal system.

She has the most common type: juvenile idiopathic arthritis. The Arthritis Foundation defines it as a chronic, inflammatory autoimmune disease in which the body's protective immune system attacks its own tissues, particularly the joints, causing pain, swelling and sometimes deformity. Currently there is no cure, but it can be managed.

"When the doctor first told me the diagnosis, it felt like someone ripped my heart out," Mrs. Carroll said. "I remember thinking, 'How could this happen to my baby?' "

On Dec. 7, Maddie will be honored at the Arthritis Foundation's annual Jingle Bell Run/Walk for Arthritis on Pittsburgh's North Shore. The U.S. Track and Field-certified 5K helps to raise awareness and funds for arthritis research, programs and education.

For the event, more than 3,000 runners and walkers will dress in festive attire and tie jingle bells to their shoelaces. Maddie wants to participate in the Tinsel Trot 100-yard dash for children that is part of the event, her mother said.

Registration is from 7:30 to 9:30 a.m., and the 5K starts at 10 a.m. For details: www.jinglebellrunpittsburgh.kintera.org.

Before Maddie's diagnosis, her parents had never heard of arthritis affecting children.

"I thought it was something that just happened to old people," said Mrs. Carroll, 37, who works as a financial analyst at Thermo Fisher Scientific in Robinson. Her husband, 40, is director of workflow at EditShare in Boston, Mass.

In 2011, while celebrating her second birthday at a local gymnastics center, Maddie hurt her ankle after jumping from a balance beam. She was limping the following week, Mrs. Carroll said.

Based on X-rays, an orthopedic doctor thought she fractured a growth plate in her foot; he gave her a little orthopedic boot to wear, Mrs. Carroll recalled. But by the next appointment, Maddie's ankle was still stiff and swollen, and she was still limping.

Blood tests that were taken to rule out an autoimmune disease were positive for antinuclear antibodies, or ANA, a marker that suggests the presence of arthritis. After further testing, a pediatric rheumatologist at Children's Hospital of Pittsburgh of UPMC confirmed the diagnosis of juvenile arthritis.

"I started to cry because I didn't know what that meant," Mrs. Carroll recalled. "The doctor gave me an overview -- telling me some children will need joint replacements, some can't function at school or hold pencils, all of this horrible stuff."

Both of Maddie's knees and ankles had active arthritis. Her left ankle was immobile and she had a severe limp. Due to pain, she stopped running and jumping and noticeably began doing calmer activities such as coloring, Mrs. Carroll said.

"When she first started taking medications, in the morning she would call me from her bed and ask me to carry her to the kitchen because her feet 'won't work.' It broke our hearts," Mrs. Carroll said.

Her condition initially improved after she had arthrocentesis surgery -- which drains fluid from the joints and injects steroids to reduce swelling -- and after she took methotrexate, a drug which slows disease progress, for six months.

But in June, active arthritis was detected again. The couple agreed to begin giving Maddie weekly shots of etanercept, a biologic that helps to lower levels of a protein that spurs inflammation. But after three weeks, they threw in the towel.

"She would cry and fight it, and we'd have to hold her down while my husband tried to put the medicine in her leg. Her 1-year-old brother, Grayson, would be standing there crying, too, because he didn't know what was going on. It just wasn't working," Mrs. Carroll said.

Their pediatrician's office agreed to take over administering the shots.

Now Maddie is a happy child who just takes a lot of medicine, Mrs. Carroll said. In addition to the weekly shots, every three weeks, she must get her blood tested and see an ophthalmologist because arthritis sometimes affects the eyes.

Doctors can't say for sure if Maddie's condition resulted from the balance beam injury, Mrs. Carroll said. The cause of juvenile arthritis is unknown, although researchers believe there are potential heredity and environmental links.

She said what's most important to her family is that lately, Maddie has not complained of pain. She plays, rides her bike, runs and takes swim lessons. A few weeks ago, she was jumping on a trampoline at a friend's party.

"The past three months have been great, and I'm not going to stop her from being a kid," Mrs. Carroll said.

Details: www.arthritis.org.

Kathy Samudovsky, freelance writer: suburbanliving@post-gazette.com.


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