Sam Lincoln, who turned 8 April 9, has come a long way since we first shared his story. He was diagnosed with systemic onset juvenile rheumatoid arthritis, or Still’s Disease, shortly after he turned 1. Years of inflammation and pain hampered his growth and mobility. He had to learn to walk three different times. But since 2006, Sam has grown a few inches and gained nearly 20 pounds. He’s starting to blend in with his second-grade peers at Emerald Hills Elementary in Culpepper, Va., says his mother Christina Lincoln. He even runs now.
“In spirit, Sam’s a typical upbeat 8-year-old boy, even though he still suffers from JRA (juvenile rheumatoid arthritis) and related issues,” 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. In February, Sam was the “Key for a Cure” auction ambassador at an annual black-tie gala in Richmond, Va. He gave a speech to approximately 400 attendees. And last November, he traveled to Atlanta to speak at the Arthritis Foundation’s 60th birthday celebration; he was the only child at the event. “I was a little scared,” says Sam, “there were a lot of people.” But his mom thinks he was a natural.
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.” He’s no longer on steroids and takes far less medication.
“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 recalls her son’s dogged determination when he’d come up to bat, hit the ball, and run to first base. Afterward, the coach would put in a substitute runner, so Sam could rest. 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.”
Sam also enjoys imaginative play. “He’s had to rely on his imagination so much in his childhood. He loves to play school,” says Christina. “He’s always the teacher, always the enforcer.” She adds that he’s a puppet master of sorts. Sam likes to dictate what he and his playmates will do and how they’ll play. “It’s his way of limiting his activity level, without limiting interaction,” she says.
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. “Recently, we got Sam a walker to assist him in getting around. It’s not because he has regressed, but just because sometimes he’s tired and needs adaptive tools to help him,” she explains.
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 – like his cousins and playmates Joe, 6, and Shane, 5, who live two doors down from the Lincolns – 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.
Sam has eagerly awaited his eighth birthday. In fact, he even mentioned it a few times in his recent Arthritis Foundation speeches. Christina says Sam has received dozens of birthday wishes from Arthritis Foundation volunteers and staff from around the country; he’s feeling quite special, and the Lincolns are touched.
At long last, Sam will celebrate his big day with family and friends this week. He’s already enjoying an early birthday present – a battery-operated four wheeler, which helps him move around his yard more easily. What does Sam most look forward to about being 8? “Getting taller,” he says.
‘Team Sam I Am’ Prepares for the Arthritis Walk
On May 2 in Fredericksburg, Va., Sam and his team will walk for arthritis awareness. This year marks Sam’s sixth walk since he was 2. “He usually has 15 to 20 people on his team, but even more people help him with fundraising,” says his mother, Christina Lincoln. With the gift-matching program that’s offered by Verizon (Sam’s father Travis’ employer), Team Sam I Am has raised tens of thousands of dollars for the Arthritis Foundation. “One year, we raised $16,000. Last year, we raised around $10,000,” says Christina. To check out Sam’s donation page, click here.