The first time Nathan Everett ever boarded an airplane, he landed right in the heart of the nation’s capital and political advocacy. The sixth-grade Michigan student and his father had been asked to visit Washington, D.C., as part of the Arthritis Foundation’s annual Advocacy and Kids’ Summit.

Every year, children with arthritis, along with their parents and other  advocates, convene for several days. First, they receive training and education about arthritis-related initiatives, followed by meetings with members of Congress.

Nathan, an articulate 11-year-old, participated in a significant meeting with Rep. John Dingell (D-Mich.). The long-time representative, elected from Nathan’s congressional district, is chairman of a key subcommittee involved with arthritis legislation.

Nathan shared his story of being diagnosed at age 3, when an injured left ankle stubbornly refused to heal. He talked about how he was forced to stop wrestling after one knee developed arthritis. (He still plays football, baseball and soccer, among other sports.) “He refuses to define himself by this [arthritis],” says his father, John. “He refuses to go for pity. He has a lot of self-confidence, he’s smart and he has a certain degree of charm to him.”

After Nathan spoke, so did two sisters, both of whom have arthritis. During the course of the day, the Everetts also spoke with another member of Congress and at least four legislative aides.

The meetings left both Nathan and his father itching to do more. “It got my attention level to where I’m now motivated,” John says. “Once I’m motivated, I tend to be kind of stubborn.”

Prior to the trip, the Everetts had approached a local newspaper about Nathan’s advocacy plans. A reporter wrote about Nathan’s journey and his disease. After returning from Washington, D.C., John planned to contact the newspaper again to see if a reporter would delve into the legislative angle and write about the lack of movement on key arthritis initiatives.

Nathan, intrigued by the congressional pages and other activity on the House floor, now is more determined than ever to get his law degree. With that in hand, he plans to return one day to Washington, D.C.

Speaking Up: An Update

It’s been five years since Nathan boarded that plane to Washington for the Arthritis Foundation’s annual Advocacy and Kids’ Summit. Today, at 16, Nathan hardly seems like a kid. The soon-to-be high school junior works hard at school, plays the drums in a band, enjoys attending rock concerts with his dad and will soon receive his driver’s license.

While his arthritis is not in remission, it is generally well controlled with a cocktail of medications, including etanercept (Enbrel), hydroxychloroquine (Plaquenil), sulfasalazine (Azulfidine) and endomethacin (Indocin). “He’s been on this group of meds for a while now and they seem to be working,” says his father, John.

Although Nathan has no plans to return to Washington immediately, he is looking forward to another trip. This summer he will travel to Lapeer, Mich, where he will be a counselor in training at Camp Dakota, a week-long summer camp for children and teens with juvenile arthritis and related diseases.

 

Excerpted from the Arthritis Foundation’s Raising a Child With Arthritis: A Parent’s Guide. To order a copy, click here.

(Updated 2012)