The Onstott family of Mt. Pleasant is trying to get back to living normally after their 11-year-old daughter, Madisyn, was diagnosed with juvenile idiopathic arthritis (JIA).
“We’re not quite at the success, happy-go-lucky story just yet,” says Kim Onstott, Madisyn’s mother.
About 300,000 children younger than 18 years old in the United States have JIA, a chronic autoimmune disease characterized by joint inflammation. Its cause is poorly understood.
Madisyn’s problems started in September 2020, when she began experiencing ankle and foot pain. She is an active child and had been running 20 miles per week in an attempt to make the Beal City Middle School cross country team.
Madisyn wore a walking boot for 12 weeks, but the pain persisted.
In October, she told her mom she thought one of her fingers was broken because it was so swollen. One month later, she was diagnosed with JIA.
Kim and her husband Patrick have two other children, Breanna, 17, and Cameron, 6. Madisyn is adopted, and her birth family has no history of arthritis, Kim says.
“For us, it’s been hard,” she adds. “It’s rocked our whole world. But we never try to be sad about it in front of Madisyn.”
Madisyn uses a walker and is in aquatic physical therapy to keep her joints active. On bad pain days, she uses Norco.
She needs a wheelchair for excursions such as shopping and going to the park, and she is easily fatigued. She struggles with homework because writing and typing are difficult, and there are mornings she is unable to get out of bed without assistance.
In December, she began a regimen of a high dose of steroids and weekly Methotrexate injections.
Through it all, the Onstotts are remaining hopeful and optimistic.
“I have read many success stories where after finding the right medication, the children gain back their mobility and the pain goes away,” Kim says. “We just aren’t there yet, and I hope and pray for the day we do get to that point.”
The family hopes Madisyn can return to school this fall for seventh grade.
In the meantime, they are looking forward to camping this summer near Ludington.
“We need to start living again, need to start doing normal things again,” Kim says. “Yes, it’s a disability, but she’s going to have to learn to live with it.”
