“Hey, ladies – I’m here to get poked,” says five-year-old Sam Lincoln of Remington, Va., greeting nurses at the Lombardi Center for Children at Georgetown University Hospital. Sam goes there for monthly infliximab (Remicade) infusions to treat his juvenile rheumatoid arthritis (JRA), which he’s been battling since age one.

Sam’s had a rough go of it. He’s faced four years of inflammation and pain. He’s never known remission. His wrists are usually swollen and some of his fingers and toes are curled inward where the disease has damaged his joints. He walks with visible stiffness, sometimes throwing his legs out to the side and then forward to move. He frequently runs fevers and he’s covered in rashes daily. Steroid treatments have kept him the same size for about three years now. “Sam only weighs about 33 pounds,” says his mother, Christina Lincoln. “He hasn’t gained any weight since he was two.”

Lucky for Sam, he’s got the unwavering love and support of a close-knit family – his mom and dad, his grandparents, aunts, uncles, cousins and a younger brother. Lucky for the Lincolns, they have this inspiring little man, as they affectionately call him, in their lives.

“He’s an amazing kid,” says Christina. “From the beginning, he just adapted. When he couldn’t crawl, he would use his elbows to move. When that didn’t work, he’d scoot around on his bottom. There’s never been a time through all of this that Sam has lain in bed all day. He always gets up. He always gets dressed. And he always has a big smile,” she says.

Learning to Walk Again and Again

The onset of Sam’s arthritis was quick and chaotic. Around his first birthday, Sam developed a rash on his left arm at the site of a recent vaccination. “It was red and raised about the size of a quarter – it was very angry looking,” says Christina. Persistent high fevers prompted Christina and her husband Travis to take Sam to the emergency room.

For the next couple of weeks, Sam experienced symptoms every afternoon. “The rash flared and his fever spiked to 104 degrees, but by the next morning he was fine,” recalls Christina. “Sam was seen by numerous doctors, including an infectious disease team. After 12 days, everything was ruled out except for rheumatoid arthritis,” she says. 

Because there are so few pediatric rheumatologists in this country, most children have to travel long distances for their diagnosis and care, but the Lincolns were fortunate. One of the sub-specialists worked nearby, and Sam was soon diagnosed with systemic-onset JRA. 

Although JRA is the most prevalent kind of childhood arthritis – some 30,000 to 50,000 kids in the United States are affected – only 10 percent of this population has systemic-onset juvenile rheumatoid arthritis, or Still’s disease. This sub-type disturbs many bodily systems and can be more severe than more common forms of JRA. In addition to inflamed joints, it can cause enlargement of the spleen and lymph nodes; inflammation of the liver, heart and surrounding tissues; and anemia.