Juvenile Arthritis Awareness Month – Macy’s Story

It was a sunny July day when Macy Holbert, who was 12 years old at the time, and her family took a trip from their home in Bridgeport, W.Va., to the Columbus Zoo. Not long after they arrived, Macy started feeling extreme pain in her feet and legs. “It hurt so badly that my dad had to give me a piggyback ride,” Macy said. Her mom, Holly, thought maybe she’d outgrown her shoes.

When the pain didn’t subside, they visited a podiatrist back home in West Virginia. They were told Macy had stress fractures and tendonitis, and she was given special boots to wear for six weeks. But Macy didn’t feel any better. Frustrated by seeing her daughter in such pain, Holly went looking for answers. She talked with Macy’s uncle, who is a physician. He was concerned about juvenile arthritis due to her symptoms and tests.

“It was a total shock,” Holly said. “Up until the day of the zoo, there were no signs or symptoms. It was totally out of the blue. She hardly ever got sick. We never thought about arthritis.”

Macy’s uncle knew immediately who to call. He referred the Holberts to Daniel Kietz, MD, PhD, clinical director of Rheumatology, at UPMC Children’s Hospital of Pittsburgh. During their first visit with Dr. Kietz, he examined Macy and confirmed that she had Juvenile Arthritis. He also identified that Macy had inflammation not only had in her feet like they had thought, but her shoulders, knees, legs, and fingers as well. Her joints were severely inflamed, and she had no range of motion in her ankles, making it nearly impossible to walk.

“Before the pain started, Macy never sat still,” Holly explained. “She was always playing with her brothers, skating, playing basketball or softball. Then suddenly, she could barely walk. She would just lie down. She missed months of school.” Macy added, “For a few weeks, the nurses at school had to push me around in a wheelchair.”

Juvenile arthritis occurs when the immune system attacks the joints. If left untreated, it can cause irreparable damage. It isn’t genetic, nor is it a symptom of injury. The causes are unknown. Luckily, however, the treatments are not.

Dr. Kietz got Macy on the road to recovery. A variety of pills, injections, and therapies helped Macy improve one step at a time. “She did aquatic therapy for eight months because she was physically unable to do land therapy,” Holly said. “Without Dr. Kietz’s care, I honestly believe Macy would be wheelchair-bound today. Dr. Kietz has been wonderfully supportive emotionally and psychologically, as well as an excellent physician.”

Gradually, Macy got better. The inflammation lessened, and little by little she started to walk…then run. “I ran two 5K races late last year,” Macy said. “And I’m running on the Cross-Country team for my high school.”

Now, two years after that day at the zoo, Macy is doing very well. She is taking fewer medications and visits Dr. Kietz every three months. She does everything she wants to do. “With Dr. Kietz’s treatment, you would never know that she has arthritis,” Holly said. “I think even she forgets that she has it. She’s resilient.”

Holly counts her family lucky that they have such an incredible support system. Their friends, Macy’s school, and their church community have helped the Holberts during a very uncertain and scary time. “Our faith in God has brought us this far and allowed us to remain hopeful when things were difficult,” Holly said. “And we are so appreciative of Dr. Kietz and his team. They are a blessing.”

To other kids and families dealing with a juvenile arthritis diagnosis, Holly said “Take one day at a time. We tried to be positive about the situation. And having support from Macy’s doctors and the community was so important.” And Macy, who has endured it all with a smile on her face, said, “It gets better.”