At age 2, Peyton Domers took a fall very typical of toddlers, but the swelling of her right knee led her parents to worry that something else may be going on.
An ER visit followed. The knee was not fractured, and over the next few weeks, a bacterial infection, lupus and other causes were ruled out. But the swelling and pain persisted.
“It took us by surprise,” said Peyton’s mother, Nikki. “There were tears. We read articles online that were awful. As a parent you want to help and control everything for your child, but this was something so new and we felt it might be out of our control.”
The past 4 years have been a journey for Nikki and her husband Craig. They have immersed themselves in information about JRA and have come to count on Peyton’s care team.
In addition to Dr. Toth and nurse practitioner Nancy Delnay, Peyton regularly sees Dr. Nancy Hanna, a pediatric ophthalmologist, as JRA can threaten vision. Dr. Heather Strawbridge treats her asthma.
“One of our most challenging issues, quite honestly, has been the cost of Peyton’s medication,” said Nikki. “It’s one thing to learn your child has this serious illness and another to learn a 4-month dose of medicine costs $18,000 and to worry that your insurance may not cover it.”
Humira, which has been helpful in relieving Peyton’s symptoms, and other biologic drugs have been in the news because of their high cost. There are no generic options, and unlike most drugs that are made through chemical processes in a lab, biologics are generally use human or animal proteins and are much more complex to make.
It took a few months of phone calls and advocacy before the Domers knew their insurance company would pay for Humira.
“Peyton gets a bi-monthly shot and thank goodness Dr. Toth was able to get samples those first few months,” Nikki said. “Because of its high cost, we have come to refer to her medicine as ‘liquid gold.'”
Peyton, who just completed kindergarten at Turkeyfoot Elementary School, continues to struggle with the swelling and painful flare-ups that come with JRA. She has done well with a gluten-free diet and benefits from having a mom who’s a massage therapist and always willing to “stretch her out.”
After 6 diagnoses of strep throat, she recently had her tonsils and adenoids removed.
JRA is an immune system disorder so the Domers and Peyton’s teachers are vigilant about keeping her germ free with simple precautions such as not allowing her to share school supplies.
“During soccer games, she sometimes has to raise her arms as a signal to tell her coach, ‘My bones hurt and I need to sit out right now,'” said Nikki.
According to her mom, the best word to describe Peyton is “brave.” She pushes through pain to keep up with her peers and do the things she loves like horseback riding and playing tag with friends. When she grows up, she wants to own an aquarium and save sea animals.
The Domers, who also have a 9-year-old son, Travis, know they’re fortunate to have the expertise of their pediatric specialists within a 20-minute drive from their home.
“About 8 or 9 states lack even one pediatric rheumatologist,” Nikki said. “So, we feel very blessed in that regard. One of the doctors is always on call so I can reach someone whenever I call, day or night.”
The Domers are looking forward to traveling to Washington D.C. with Charlie Solley, director of government relations for Akron Children’s, as part of the Children’s Hospital Association’s annual Speak Now for Kids Family Advocacy Day June 21-22.
Peyton will join other children representing children’s hospitals across the country in meeting with lawmakers and sharing their stories with the hope of maintaining support for Medicaid, the Children Hospital Graduate Medical Education Program, the ACE Kids Act and other programs that benefit children’s hospitals and pediatric patients.
“Peyton, Nikki and Craig will be great advocates for Akron Children’s Hospital and all children’s hospitals because they found themselves on a medical journey no one expects,” said Charlie. “Policies and legislative votes take new meaning when real stories, real families, and real children are behind them.”