Six-year-old Andy Butscher and his four-year-old sister Katie share an unpleasant bond. They have arthritis. After Andy was first diagnosed with this disease, he quickly learned how painful the treatments were. So when his little sister Katie was diagnosed and forced to undergo the same treatments, Andy would sing to comfort her. Arthritis has taught these kids all about strength and that arthritis isn’t just an old person’s disease.

In fact, there are 300,000 U.S. children diagnosed with juvenile rheumatoid arthritis (JRA), which is a higher number of cases than juvenile diabetes. Since Katie and Andy fall in this 300,000, they know that arthritis can make you feel so bad some days that you just lay on
the floor and cry.

Andy became ill when he was around 18 months old. “He had been walking normally, then he began to have trouble,” says his mom, Julie Butscher. “Then he began to cry whenever we tried to put his shoes on. Pushing at his ankles, forcing his foot in suddenly was too painful.”

Unfortunately, it took awhile to diagnose and find the right way to deal with the arthritis. X-rays and a visit to orthopedic specialists confirmed that Andy had Pauciarticular JRA, meaning that fewer than five of his joints were affected. But because the JRA had grown so serious, aggressive medications, including injectable treatments, were begun. It took a long time to get the disease under control so he could live somewhat pain-free. His parents could tell when the disease was flaring, because his joints would get red and swollen and warm to the touch. JRA, if not caught soon enough, or controlled well enough, can disfigure the joints, literally destroying the bone and connective elements of the joint. This is because the body’s immune system thinks the joint is foreign tissue that needs to be destroyed. For Andy, it’s his ankles that have been the most affected in this manner. “When he was first diagnosed,” says his mom, “we thought, arthritis? Well that’s not so bad. We had no clue what was in store for us.”

After Andy was diagnosed, his mother became pregnant with Katie. Sadly, the struggle to get his disease under control overshadowed Katie’s infancy. Mom remembers nursing tiny Katie at night, while holding Andy in her lap, whose pain caused him to have to sleep sitting up. Then when she was nearly a year-and-a-half old, Katie’s mother found Katie writhing in pain on the floor. The once mobile girl now couldn’t walk or even crawl. With a familiar sinking feeling in their stomachs, mom and dad, Mark Butscher, took Katie to the specialists who told them that incredibly, their baby girl also had JRA. Incredible, because siblings with JRA is an extremely rare occurrence.

Because of Katie’s fast diagnosis, her treatment began immediately. This helped the JRA in her knees to be quickly brought under control, giving her fewer flare-ups than her brother. But for the bad times each child experienced, their mom developed strategies to help reduce their pain. Strategies like giving them a long bath each morning to loosen their joints. Or carrying the children to the playground, so they had strength and weren’t in too much pain. “It is horrifying to be with a child in too much pain to even play,” says their mom.

There are other side-effects to the disease. As adults, people with RA can be extremely sensitive to light because antibodies affect the eyes. If left untreated, RA can cause blindness. Mom remembers how tough preschool was for Andy, because the medications he was on at the time changed his personality and made him more aggressive. “His school,” notes mom, “was not willing to listen. Here they give such sympathy to a child with diabetes, but for our son with JRA, they didn’t want to believe that arthritis and the treatment was a thing that could cause what we were dealing with. It was so hard.”

Fortunately, the Butscher’s found a lot of encouragement at the Rocky Mountain Chapter of the Arthritis Foundation. “Mark and I have gotten support and resources,” says mom. “It’s a community that understands what we deal with. We have a support group that helps us cope with raising kids with these challenges. And the funding for research is critical. The hope, always the hope, is that there will be a cure. But before there is, we hope for remission.”

Remission is a term normally associated with cancer, but it’s also possible with JRA. The damage already done cannot be reversed, but remission means that the disease’s progression is arrested, sometimes for long periods of time, allowing a child to grow up relatively pain-free. Andy and Katie have just reached a point where they’re off medications, but haven’t experienced remission. “You never know how long it’s going to last,” says mom. “And when it comes back, it is often worse. We need more funding for research to find a cure. We need more rheumatologists here in the Rocky Mountains, especially pediatric rheumatologists, because we have so few.”

One of mom’s most trying moments was a particular night when she was making dinner. Three-year-old Andy was sitting at the dinner table behind her and sighed, “Mom, I think I’ve lost the fight. I think the arthritis is coming back.” Luckily his mother had her back to him so he wasn’t able to see her tears.

Andy and Katie are just two of the kids dealing with JRA. But they’re handling it like they’re all grown up.

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