Laura Millar, once she gets going, can’t sit still very long. She snaps her fingers, bounces slightly in her seat and travels between the vending machine containing small toys and the dining table. She loves sports.
“In the summer I like to swim,” said the 9-year-old with curly red hair and a big smile. “Sometimes in winter I play hallway soccer.”
Laura also takes dance lessons, and plays on both a soccer team and a basketball team. Strangers looking at Laura would never know that some days just getting out of bed is a challenge.
Three years ago, Laura, then age 5, started limping. She had problems walking down stairs.
“Then one day she couldn’t bend her knees anymore to climb the stairs,” said her mother, Michelle Millar. “Laura told me, ‘My knees won't wake up.’”
Michelle took Laura to her doctor, who performed blood tests. The blood tests were inconclusive. She was referred to a specialist, who identified that Laura has juvenile idiopathic arthritis (JIA), a disease that attacks the tissue that lines the inside of joints, causing swelling, difficulty with movement and frequent pain.
Idiopathic means of unknown origin.
“The pediatric rheumatologist identified it in her wrists, and that was a complete shock to me,” Michelle said. “I only knew about her legs. Laura’s response was, ‘Oh, is that why it hurts when I color?’”
The pediatric rheumatologist, Dr. Adam Reinhardt of Children's Hospital and Medical Center in Omaha, originally hoped Laura would be in remission within one year. Three years later, she still suffers from this condition, which has spread to her middle fingers. She can bend her fingers backward, but can only slightly curl them forward.
Laura takes Celebrex and folic acid twice a day. She received a series of cortisone shots. In September 2011, with the condition worsening, Reinhardt started Laura on weekly methotrexate shots.
One of the common side effects of methotrexate is nausea, so Michelle tries to make sure she gets the injections after school so she can sleep through the side effects of the drug.
Michelle and Laura hope the methotrexate shots help, because if not, the specialist may repeat cortisone shots or add another injection. Laura does not like the idea of more cortisone shots, shaking her head voraciously at the mention of it.
Every three months Laura has an appointment with Reinhardt, who checks Laura's range of motion and strength. Reinhardt frequently then sends Laura to the lab for blood work, which shows how well the medications work.
“He can tell so much just by feeling, it’s amazing,” Michelle said. “Each time you go to the rheumatologist you’re a little nervous he’s going to find something new.”
Michelle started a support group in Omaha called Juvenile Arthritis Warriors (JAWS). The group includes the families of about seven children in the area with JIA.
One of Laura’s best friends, Lily Moore, also has JIA and is in the group, which has proven to be beneficial for both girls.
“Laura was so sore the other day, she just came home and went to bed,” Michelle said. “When I came home from work she was crying. I had Laura get on the computer and ask Lily (via e-mail) if she’d had a bad day. Sure enough, Lily also had a bad day.”
The weather had changed drastically that day, with both rain and a 40-degree temperature change. Like many people with arthritis, Laura’s degree of pain changes with the weather.
“Every time I hear the weather is changing I wonder how it is going to affect her,” Michelle said. “Every time I get a phone call at school, I worry. It takes an emotional toll on everyone.”
The Millar family is working to help find research dollars, and hopefully a cure, for Juvenile Arthritis. May 12 is the annual Arthritis Walk, which will be held at Stinson Park in Omaha. Michelle and Laura will be on a team named Laura’s Blessings.
“Because, in spite of it all, our whole family is so blessed because of the support, not to mention the prayers,” Michelle said. “The Glenwood community, especially, has been so amazing in the amount of support they have given us.”
To raise money for the Arthritis Foundation, Laura’s soccer team hosted a car wash last Saturday at Barrett Auto in Glenwood. Laura’s dance teacher, Rebecca Bardsley, had T-shirts designed for the team to wear at the car wash.
Curt Becker moved his softball team’s practice time on that day so the team members, which includes Laura’s oldest sister Megan, could help out at the car wash. Photographer Amy Kennedy took photos of the soccer team this year, and is donating a portion of the proceeds to the Arthritis Foundation.
Michelle had rubber bracelets made that say “Laura’s Blessings.” She is taking free-will donations for them, and feels grateful for each dollar she can generate for the Arthritis Foundation.
“I’m surprised, but kids keep saying they want them. I had a parent tell me her daughter is in middle school and wants one, but didn’t know where to get one,” Michelle said. The bracelet sales have raised about $400.
Despite some of the difficulties JIA has caused for Laura, she hasn’t let the disease get her down.
“She keeps a good sense of humor about it,” Michelle said. “When Lent started, Laura said, ‘Mom, I think I’m giving up arthritis for Lent.”