Boys Town Infusion Center Helps 5-Year-Old Spencer Battle a Rare Autoimmune Disease
A camping trip in July 2020 changed Spencer Ball's life and ultimately spurred his mom's effort to raise awareness about a rare, life-threatening disease.
Cassie Steinkuehler, mother of then 5-year-old Spencer, said her son broke out in a rash on a family camping trip. It was serious enough to cause concern, so they went to the ER, where Spencer received steroid treatments; but the rash persisted and even started to affect his vision.
By the end of July, Spencer was diagnosed with juvenile dermatomyositis, or JDM, and referred to Adam Reinhardt, M.D., and his team at Boys Town National Research Hospital.
What is JDM?
JDM is a rare type of autoimmune disease that mostly affects the muscles and skin.
Some kids take months, or even years, to get diagnosed, according to Dr. Reinhardt, board-certified pediatric rheumatologist at Boys Town Hospital and the lead on Spencer's treatment team. But early diagnosis is key to preventing lasting muscle and skin damage.
“JDM first presents as a skin rash, often due to sun exposure," Dr. Reinhardt said. “It frequently shows up first on the face, eyelids and knuckles."
From there, the disease can progress to the muscles.
“Children will start to have muscle pain and significant weakness that impacts their day-to-day activities," said Dr. Reinhardt.
JDM is often mistaken for eczema or psoriasis, but JDM patients also experience fatigue, muscle weakness, muscle pain, joint problems and other symptoms not associated with eczema or psoriasis.
Treatments at the Boys Town Infusion Center
Even though Spencer lives in Iowa, he travels to the Boys Town Infusion Center for treatment every four weeks. Infusions can take seven to 10 hours.
The Boys Town Infusion Center is unique in that it has individualized rooms for lengthy infusion treatments.
“I think the comfort of not being in a large room with other patients is a benefit to our pediatric patients and their families," Dr. Reinhardt noted.
Dr. Reinhardt said steroids are the common treatment for JDM, but that in children, it can have a lot of side effects that they want to avoid. He said Spencer also receives treatments that lessen the side effect of steroids.
“We use his infusions to control his disease and get his overall steroid requirements down substantially, which will help his overall long-term prognosis," Dr. Reinhardt said.
Selling Merchandise to Give Back
Cassie felt the need to give something back to help other families dealing with JDM, so over the 2021 holiday season she produced t-shirts, hoodies and koozies, with all proceeds going to the JDM Foundation or the Boys Town Infusion Center.
Cassie said they still enjoy outdoor activities as a family, but sunlight aggravates Spencer's condition.
“We're outside people, so we need to make sure he's got 100 SPF sunscreen on at all times," Cassie said. “We need to set timers on our phone and just be continually aware of his condition."
She said she's hopeful that Spencer's illness will go into remission.
“If he maintains his progress, then his infusions will be every six weeks, instead of every four," Cassie said.
For the Boys Town Pediatric Rheumatology team, the most important thing is to find an individualized treatment that helps Spencer lead a life that brings him joy.
“Our goal for every child with JDM is to find the right combination of medications and to suppress the disease long enough to produce remission," Dr. Reinhardt said. “The goal is to take them off all medications eventually."