As told by Arthritis Today
Sam, who turned 8 in 2009, was diagnosed with systemic onset juvenile rheumatoid arthritis shortly after he turned 1. Years of inflammation and pain held back his growth and mobility. He had to learn to walk three different times. But over the past three years, he has grown a few inches and gained nearly 20 pounds. He’s starting to blend in with his second-grade peers, says his mother, Christina.
“In spirit, Sam’s a typical upbeat 8-year-old boy, even though he still suffers from JRA,” says Christina. “He’s still small, but he doesn’t look out of place,” she says. And his personality is as big as ever. “Sam gets reprimanded at school for being a clown,” she says laughing. “He’s very outgoing and quite popular.”
He’s so outgoing that he recently spoke to a crowd of a few hundred – twice. Sam gave a speech to approximately 400 people at a black-tie party held by the Arthritis Foundation. He also traveled to Atlanta to speak at the Arthritis Foundation’s 60th birthday celebration. “I was a little scared,” says Sam, “there were a lot of people.”
A change in medications two years ago sparked a turn-around in Sam’s life. Once he began daily Kineret injections, his family noticed immediate improvements in his mobility and well-being. “The systemic part of his disease is in remission now,” says Christina. “His joints are still painful, but overall he’s so much better.”
“Sam played T-ball last year. It was great to see him out there!” reports his proud mom. “Everyone was always rooting for Sam – he had his own following. But he didn’t have the stamina to stand in the field too long, so he took breaks.” Christina says he enjoyed T-ball, but did not choose to play again this year. “He accepts his limitations, but still perseveres,” she says. “Now he’s interested in karate.”
A new activity, aquatic therapy, helps Sam exercise his joints and build muscle. Twice a week he works with a therapist in a very warm therapeutic pool. “He loves it,” says Christina.
Although Sam recognizes his physical limitations, he’s beginning to express frustration. For one, he wishes he could run faster. When Sam points to other boys who zip around tirelessly, Christina boosts his confidence. “I remind Sam that while he can’t do everything that other kids do, he can do some things that other kids cannot, like give speeches to hundreds of people,” she says.
Copyright 2010, Arthritis Foundation. Adapted with permission from Arthritis Today, 2009.