The saying goes that it takes a village to raise a child. Chrissy Rose had always known that statement was true, but when her toddler son, Carson, was diagnosed with juvenile arthritis (JA) at 15 months, she felt it even more acutely.
“We hardly understood that our child could have arthritis, let alone knew anyone else who was dealing with it,” recalls Chrissy. “We were a little lost.”
After moving from Ohio to Indiana far away from most of their family and friends, the Roses connected with their local Arthritis Foundation in Indianapolis. While they formed a small team for their first event– the Indy Walk to Cure Arthritis — they found inspiration to expand their team and fundraising efforts for the next year’s walk.
Continue reading Expanding their Village: Carson and the Arthritis Foundation
Like a lot of three year olds, Carson is still working on his “th” sound,” so it should come as no surprise that when he talks about arthritis, it sounds more like “arfritis.” What is surprising is that he has to talk about arthritis at all.
Diagnosed with juvenile arthritis (JA) when he was just 15 months old, Carson is just one of nearly 300,000 children who have JA. Carson’s arthritis is polyarticular, which means it affects five or more joints. While Carson initially struggled mostly in his knees, he also has limited mobility and increased pain in his wrists. While you’d think that pain would be a clear indicator of arthritis, for Carson and thousands of other children, getting a diagnosis was not that simple. The myth that arthritis is only for older people persists.
Continue reading When Being a Child Hurts: Even Medicine Can’t Make it All Better
By most accounts, Carson is a typical three-year-old boy. His room is decorated with superheroes. He can’t get enough of the Teenage Mutant Ninja Turtles. He’s counting down to his fourth birthday. He loves to color. Trucks and dinosaurs are frequent playmates. But there’s one way — and it’s a big one — that Carson isn’t typical at all. He has juvenile arthritis (JA).
Though it took several months, Carson received his official diagnosis of polyarticular juvenile arthritis, meaning it affects five or more joints, when he was just 15 months old. His mother, Chrissy, suspects he had been in pain for much longer.
Continue reading Meet Carson Rose: Redefining Normal & Turning a New Reality Into Yes
When Mariah Aquino-Truss was four-years-old, she named one of the bumpy hills near her house the “Arthritis Hill,” because every time she and her mother, Tory, drove over the hill, the bumps in the road would cause her to cry out in pain.
“She was old enough to know something was different, but not old enough to know how to process it,” says Tory.
Mariah began experiencing arthritic symptoms around age three, when she had severe neck pains that became so bad that she had difficulty moving her jaw. But when Tory would drive her to the emergency room, they were told there was nothing they could do.
Continue reading A Family of Warriors: How Mariah Aquino-Truss and Her Family Fight JA