LIVINGSTON, NJ – As the 10th Anniversary Walk to Cure Arthritis quickly approaches, Livingston’s 15-year-old Lexi Narotzky has been selected to serve as this year’s Teen Honoree at Verona Park on June 1. Having been diagnosed with Juvenile Rheumatoid Arthritis at the young age of three, Narotzky is proud to be able speak at an event that will raise funds and awareness for the millions of people who live with her condition.
Each year, about 38-million people are diagnosed with Arthritis including the 300,000 who are children. Because Arthritis is the nation’s principal cause of disability, this annual one-mile walk fights future pain by raising funds for research that will help find a cure.
“It’s so important to me that we spread awareness that children can get this too,” Narotzky said. “My biggest hope is that people will understand that kids have it because it affects 300,000 kids a year and we need a cure for this disease.”
Recently, Narotzky was invited to Washington as an advocate to speak on behalf of the largest national nonprofit arthritis organization—the Arthritis Foundation. According to Narotzky, many of the New Jersey representatives in Washington were unaware that children can develop arthritis—never mind how many. Narotzky's intention was to discuss certain bills that would help fund research to the Department of Defense as well as lower medical costs.
For Narotzky, whose fourth-tier medication can cost anywhere from 20 to 50 percent more than the regular co-pay—reducing the cost of these astronomically high-priced prescriptions is extremely important. According to Narotzky, these medications are crucial for patients to be able to function on a daily basis.
Thousands of families already have to drive up to eight hours to get to a doctor because 11 states exist without any pediatric doctors for this disease. According to Narotzky's mom, Stacey Glassman, the family is fortunate with access to several local New Jersey and New York doctors, but so many others are not.
“I wouldn’t wish this condition on anyone,” Glassman said. “It’s very hard as a parent with a kid who has arthritis but we’ve always kept our spirits high.”
Glassman described her daughter as a caring, loving child who always does her best, will never give up on her dreams, and wants nothing more than to give back. In fact, having spent her life visiting doctor after doctor, the high-school sophomore already knows she wants to become a doctor herself.
“I really want to go to a good school to become a doctor because I’ve seen so many who have helped me so much,” Narotzky said. “I want to be able to do that for other people and to be able to give back.”
Narotzky was invited to be a Teen Honoree at the 10th Anniversary Walk to Cure Arthritis by Rebecca Mooney, the Senior Director of the Arthritis Foundation, because she has already done so much to give back. Narotzky and her parents participated in the first Walk to Cure Arthritis ten years ago and have been activists for the Foundation ever since. Even during the years when the family couldn’t make the event, Narotzky did things like asking for donations instead of Bat Mitzvah gifts to continue their support.
“This is who I am, it’s something I’ve always had,” Narotzky said. “It means so much to me that all my friends and family make me feel really special that they would support me and the cause.”
According to Glassman, her daughter's diagnosis came out of completely nowhere and was identified as the “worst case scenario” for a child. At three years old, Narotzky contracted a virus that turned into a case of Rheumatoid Arthritis that now involves taking five pills a day, plus a shot each week. Having been forced to turn down play dates and sports as a child, Narotzky's involvement in the Arthritis Foundation and the Walk to Cure Arthritis allows her to feel like she’s not alone.
“When you have arthritis, it’s hard on your knees and joints to be active,” said Glassman, who is happy to have been able to find a support group for her daughter. “I’m proud that she can walk it. She’s 15—we can’t live in a bubble anymore.”
Glassman said that as a child, her daughter had to stay away from play dates with friends because even contracting a cold could worsen her condition. She added that her daughter has good and bad days, but that the bad days consist of swollen joints, stiffness and pains that are uncomfortable and difficult to live with.
“Mornings are always the worst,” Narotzky said. “Even squeezing out toothpaste in the morning can be really difficult.”
According to Glassman, her daughter's friends understand and are conscious of her condition, but it is something that is nearly impossible to see from the outside. In other words, it is difficult to remember that something as simple as climbing the stairs to her bedroom can be problematic for Narotzky. Glassman said that her daughter has come a long way, but that climbing the 22 stairs in her new Livingston home has caused her to request an elevator.
Arthritis is a chronic illness, so to develop it at such a young age caused serious interruptions in what could have otherwise been a normal childhood. Fortunately, Glassman and Narotzky said they have never left a doctor appointment without feeling like they care whole-heartedly about Narotzky. But every child’s diagnosis is different, so research needs to be done in order to find a cure and provide a better life for every child and adult diagnosed with the condition.
“When Rebecca Mooney came up to me and said, ‘We’d love you to be an Honoree,’ of course I said 'yes,'” Narotzky said. “I think they wanted someone who really cares about the Foundation and finding a cure.”
Anyone seeking more information or who wants to register for the Walk to Cure Arthritis in Verona Park on June 1, can register HERE. According to Narotzky--every participant counts and all donations benefit the cause.