Nora Powers will be calling a lot of the shots for her Jingle Bell Run-Walk team (Nora’s Flower Powers) at the November 14, 2015, Arthritis Foundation event in Syracuse, N.Y. The seven-year-old Youth Honoree, has picked a theme for her family’s and friend’s costumes, as she did for last year’s run, her first Arthritis Foundation event.
A pediatric rheumatologist diagnosed Nora with polyarticular juvenile idiopathic arthritis in spring 2014. Among the materials he shared with her mom, April McCaslin, was information about the Arthritis Foundation and its resources.
“After the diagnosis, I felt lost, a little clueless and that I had to figure out what else I could do,” says McCaslin. “I went straight to the Kids Get Arthritis Too website and started reading articles. I wanted to learn everything I could about her arthritis so we could do whatever we could do to help her.”
McCaslin soon read about the Jingle Bell Run near her town of East Syracuse and signed up. (There are events held nationwide each year).
Taking part in this Arthritis Foundation event and others has helped Nora and her family connect with needed information – and with new friends. It has given McCaslin a sense of control, something she knows she can’t have over her child’s arthritis symptoms.
“I don’t have any control over Nora’s disease, seeing her in pain or having to give her a shot every week,” she says. “This is my way of taking some control, as well as our family’s way to make a difference with our fundraising. I also felt it was something we could do to make a difference to Nora.”
Opportunities to Connect, Learn
In addition to the runs, Nora and her family traveled through an Arthritis Foundation scholarship to the Juvenile Arthritis Conference in Orlando, Florida, in July 2015, and Nora spent part of her summer at one of the foundation’s JA Camps. The family is active online, too.
Nora, who her mom describes as a careful, creative leader who doesn’t want to seem different from her peers, has made important friends through this community. “We stay in touch with these friends even though they don’t live in our state,” says McCaslin. “One was recently hospitalized so we sent her a care package. It’s nice for Nora to know that she is not alone, that there are other kids who struggle with the same kind of things she does. I don’t think she’d be where she is right now without these connections.”
Kids also want information, just like their parents. “At the conference Nora heard about an auto-injectable form of methotrexate, a pen where you just press a button and don’t see the needle, and got very excited,” says McCaslin, who gives her daughter a weekly injection. McCaslin’s insurance company wouldn’t cover the auto-injectable, but the Arthritis Foundation was able to connect her with the drug’s manufacturer, which is helping her find ways to afford the medication.
Nora is playing soccer and taking dance, enjoying the physical activity that eases symptoms and improves mobility and coordination in kids with arthritis, but her condition presents daily challenges. Arthritis affects her fingers, leaving them painful and swollen. As a new second grader, her first homework assignment involved writing five sentences using the day’s vocabulary words.
“Nora cried for twenty minutes, not wanting to touch the pencil,” says McCaslin. “I offered to write a note to her teacher, who is very understanding, but Nora wouldn’t let me. She wants to have her homework done like everyone else.”
A ‘Frozen’ Run
In the meantime, Nora is looking forward to another successful Jingle Bell Run. Last year, her grandmother’s significant other won for best costume after Nora asked him to dress as a Christmas tree complete with lights – and bring along her grandmother dressed as a present. At this year’s run, Nora will be Elsa, the Frozen princess who overcomes a difficult birthright, and she’s already assigned a few supporting roles: her two-year-old sister, Alaina, dress as Anna and her stepdad, Mason McCaslin, will be Olaf. She’s still deciding which parts her grandparents, aunts, uncles, cousins and friends will take (Kristoff, Sven, snowflakes and rock ogres are all options).
Nora and her family will continue to raise funds at Jingle Bell Runs and other events, says her mom. “Every dollar we raise gets us one step closer to a cure. I feel like taking part means we could be the ones making that difference.”