By Daisy Hutzell-Rodman
Laura Millar of Glenwood kept bending her fingers backwards as she sat in front of a plate of rice. She sat with her left leg tucked under her, then with her right leg tucked under. Then she sat flat on the chair and pushed both legs straight out in front of her.
The red-headed, 9-year old fidgeted more from pain than restlessness. Millar has juvenile idiopathic arthritis, specifically in the joints of her middle fingers, wrists and knees. She can only slightly bend her fingers forward, and some days, her older siblings must help her down the stairs because of the pain in her knees.
“There’s times when I hurt a bit, but then I’m good,” she said.
This past weekend, she served as the honoree of the Omaha Walk to Cure Arthritis. She got to cut the ribbon to start the walk and her team, Laura’s Blessings, led the way.
“She’s such a terrific honoree, because she truly has an amazing story,” Sarah Jensen, special events director for the Omaha Metro Area Arthritis Foundation, said.
Laura’s joint problems began at age 5. She began limping, then she had problems walking down stairs. Finally she told her mother, Michelle, “My knees won’t wake up.”
Pediatric rheumatologist Dr. Adam Reinhardt diagnosed Laura with juvenile idiopathic arthritis (JIA) in April 2009. He began treating her with Celebrex and folic acid. She was still in pain, so she was given cortisone shots. In September 2011, Laura began receiving weekly injections of Methotrexate shots. She continued to be in pain.
After trying several other treatments, Laura eventually started taking injections of Enbrel, a drug used for moderate to severe JIA.
While the pain lessened, Laura’s platelet count decreased drastically in September 2013. The doctors tapered her off the medicines one at a time. They cut the Methotrexate, then they cut the Enbrel in half, then they cut the Enbrel entirely.
When she learned her doctor wanted to take her off Enbrel, Laura cried, not from physical pain, but emotional.
“I’d rather take the shot than hurt like that again!” she told her mother.
Fortunately, her fears were unfounded.
“We phased her off all these meds, and she’s never had any more flares,” Michelle Millar said.
Blood problems are a possible side effect of Enbrel, but phasing Laura off these meds led to the realization she was headed toward a remission in JIA.
Reinhardt, one of two juvenile arthritis specialists in the state of Nebraska, said the combination of medications helped lead to a remission.
“In Laura’s case, her family’s compliance to take these meds is what helped bring her to this point,” Reinhardt said.
Doctors identify two types of remission, remission on medication and off medication. Laura is currently in remission on medication because she hasn’t been off of it for two years.
“She went from taking 10 pills on some days to taking half a pill a day,” Michelle Millar said.
Laura currently takes one-half of a Plaquenil tablet, a medication to reduce pain and swelling. If she hurts, she can manage the pain with ibuprofen.
Her good fortune may or may not continue.
“Laura falls into the category where she has the chance to be in long-term remission,” Reinhardt said.
That category is extended oligoarthritis, which means more than four of her joints (two knees, two wrists, and at least two fingers) are affected.
Although Laura feels better, her family feels strongly others with JIA need help. Laura’s mom started a support group called Juvenile Arthritis Warriors (JAWS). One of Laura’s best friends, Lily Moore, has JIA in her knees, elbows, hip, ankles, toes, wrists, fingers and shoulders, as well as the associated uveitis (eye inflammation).
“I wish Lily didn’t hurt. Why can’t there be one cure for everyone?” Laura lamented.
To help Lily and others, Laura and her team of 30 people, took part in Saturday’s walk. They are fundraising for the cause with a series of events. Michelle organized a jeans day in the Glenwood Public Schools, in which teachers paid $5 so they could wear jeans to work. She organized a pasta dinner at Northeast Elementary, where she teaches kindergarten. Laura’s sister Megan and the Glenwood Community High School chapter of Reach/SADD, sold rubber bracelets printed with “Laura’s Blessings” during the lunch hour.
Laura’s family participates in the Omaha Walk to Cure Arthritis every year, without question. These fundraising and activist projects helped convince Jensen to determine a 2014 honoree.
“When I looked through their history and saw how involved they have been, it was kind of a no-brainer,” Jensen said. “The reason they are such a good honoree, for me, is because they are not just committed in April and May during the walk. They are committed all year long.”