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|Eight-year-old Aislynn Sinn's optimism and resilience have been challenged, shaped and refined during the last five years of her life. |
“Aislynn had been struggling to move off the floor and her activity had been decreasing for several months,” remembers Aislynn’s mom Lindsay.
In February 2012, Aislynn was diagnosed with Juvenile Arthritis. She was put on an anti-inflammatory pain medication and scheduled for steroid injections into her knees immediately after diagnosis. She has had two subsequent steroid injections into her joints, several MRIs, and countless doctor appointments, lab draws and many infusions.
“Since diagnosis, Aislynn has had a total of six months of pain free life,” says Lindsay. “It has been a constant battle to manage her pain and stiffness ever since. She has been on many medications that she either could not tolerate or did not reduce her symptoms. The medications prescribed are scary from beginning to end. ”
Aislynn began with oral medications which then moved into injections and finally after failing these medications, she had to turn to infusions which created significant anxiety for Aislynn. Her parents sought professional counseling for the whole family to help manage this journey.
“This disease is not only taxing physically on our children, but our entire family system is stretched emotionally in ways which are surprising and difficult,” says Lindsay. “Because of our support system and faith, we are able to look back at this journey and know we are all more resilient and optimistic individuals who have learned to accept help and love in meaningful ways.”
Aislynn was eventually diagnosed with a less common subtype of juvenile arthritis, enthesitis related arthritis, which affects not only the inside of her joints, but the connective tissues around her joints. This type of arthritis is very painful and difficult to control. Currently, Aislynn receives infusions every four weeks in attempt to control her symptoms. Her family travels three hours each way for her appointments.
“Tendons in her legs were so inflamed last summer she was told she couldn’t ride her bike,” says Lindsay. “But, Aislynn’s optimism was shining as she zoomed up and down the street on her motorized scooter. Arthritis won’t hold her back, we just have learned to be creative and adapt her world to allow her to do anything she desires.”
“We need a cure,” says Lindsay. “We need to stop wondering when our children will stop hurting. We need to stop dreading the next visit to the doctor. But we also need our community to stay close and our families to stay closer. We have been blessed with the work of the Arthritis Foundation which has created space for connections between families and our community.”
Aislynn’s optimism is just one of the many reasons why the Arthritis Foundation is excited to recognize her as the 2017 Jingle Bell Run Indy Youth Honoree!