By Sarah Hall
Editor
Nora Powers is 9 years old. The Fremont Elementary fourth-grader from East Syracuse loves to paint and draw. She plays soccer, she does yoga and she dances.
And she has juvenile arthritis.
This November, Nora will be the Youth Honoree at the Syracuse Jingle Bell Walk/Run at Long Branch Park in Liverpool, which raises money for the Arthritis Foundation. The annual event invites participants to dress up in their best holiday-themed gear, be it the aforementioned jingle bells, a Christmas sweater or reindeer antlers, to run a 5K, walk a mile or participate in the kids’ run.
According to Nora’s mom, April McCaslin, said the Arthritis Foundation has provided tremendous support to the family since Nora’s diagnosis three years ago.
“When she was first diagnosed, I felt like our world was turned upside down,” McCaslin said. “I felt scared and that we were alone, but the Arthritis Foundation made me realize that there are 300,000 other kids in the U.S. — 18,000 of them are in New York — that are going through the same thing that Nora is and their families have some of the same struggles that ours does.”
The Arthritis Foundation has helped send Nora to summer camp, as well as three National Juvenile Arthritis Conferences.
“We’ve come to know these people as our ‘JA family,’” McCaslin said. “We share our triumphs and our setbacks. We laugh and we cry with these people that just ‘get it.’”
According to the Arthritis Foundation, the condition is the No. 1 cause of disability in the country. There are more than 100 different types of arthritis that affect some 50 million adults as well as those 300,000 children, falling under the categories of degenerative (caused by cartilage between bones wearing away, resulting in bones rubbing on each other); inflammatory (resulting from issues with the immune system); metabolic (from gout) or infectious.
Treatment varies depending on the type, but early diagnosis and regular exercise have resulted in the best outcomes for patients.
For Nora, diagnosis did not come early. She started showing symptoms as early as 2, complaining of pain in her feet; because of a family history of arthritis, McCaslin asked Nora’s pediatrician about it.
“She assured me that if Nora had arthritis, she would have more than just pain,” she said.
They treated her pain with over-the-counter medication until Nora was 5, when she started complaining of pain in her hands, as well.
“By the end of her year in kindergarten, we noticed swelling in her fingers and ankles,” McCaslin said. “I brought her back into the doctor. They did bloodwork, sent us back to the orthopedic doctor and started a referral to a pediatric rheumatologist. We met with Dr. Hannan on June 4, 2014, and he diagnosed her with polyarticular juvenile idiopathic arthritis that day.”
Nora is currently in medicated remission, which has allowed her to live much more normally.
“It’s been amazing to watch her soccer skills improve as her arthritis has come under better control,” McCaslin said. “She wasn’t always able to run up and down the soccer field and follow through with the ball the way that she can now.”
Still, Nora will always have arthritis.
“Juvenile arthritis is unpredictable and can go into remission, but never goes away. She will not “grow out” of her arthritis,” McCaslin said. “My daughter’s disease is an invisible one. She sometimes struggles just to get through a normal day because of the pain and fatigue she experiences.”
Because of that, McCaslin said she worries about her daughter more than the average mother.
“I probably don’t need to worry half as much as I do, because she is a warrior,” she said. “She struggles through the pain and fatigue with a smile on her face. She doesn’t let anything or anyone stop her or tell her no.”
It helps that Nora — and her family — have the support of the local arthritis community. The Powers family has participated in the Jingle Bell Run for the last three years, raising more than $20,000 for the Arthritis Foundation.
“Our entire family gets involved and we dress up in costumes based on a theme that Nora picks out for the run,” McCaslin said. “So far we’ve done a Christmas theme, ‘Frozen’ and last year we did ‘How the Grinch Stole Christmas.’ It’s an event we look forward to and enjoy being a part of.”
This year, the family is looking for sponsors to help raise money for the run.
“I know the Arthritis Foundation could benefit from some local sponsors that are willing to participate every year in order to keep the Run here,” McCaslin said. “We also need more people to form teams and fundraise for the event. Join our team if you want to! We’re always looking to expand our team.”
To donate or register for the Jingle Bell Run, visit kintera.org/faf/home/default.asp?ievent=1175397. Nora has also started her own fundraising operation, Nora’s Flower Powers; visit facebook.com/NorasFlowerPowers to learn more.
