Our daughter’s journey with Juvenile Idiopathic Arthritis (JIA) has been a difficult process but one that has taught us many things, including resilience and patience. Olivia was diagnosed at 15 months of age but started showing symptoms around 10 months. She first presented with symptoms of neck stiffness, fatigue and pain, which evolved over time to her constantly crying and eventually developing pain and reduced range of motion in her elbow, wrists, knees and ankles. She unfortunately started regressing and was no longer able to stand, had difficulties crawling, and appeared so miserable. It was such a difficult time for us as a family as she had no way of communicating her pain to us at such a young age. What began as a slightly stiff neck had now evolved into a life-altering chronic condition.
Getting a diagnosis was challenging and we unfortunately often felt overlooked and dismissed during the process. Given that JIA is a rare disease and can often present as a multitude of different illnesses, it was often challenging to have our concerns as parents heard and thoroughly investigated. After she finally received her diagnosis, that was just the first step of a challenging journey ahead. Our daughter has dealt with numerous blood draws, oral and injectable medications with numerous side effects, and imaging and MRI under anesthesia. Olivia has shown immense strength throughout this process, and we are so proud of her. All this being said, she is now almost 2 and a half and has shown immense progress. We are now followed by the amazing rheumatology team with SickKids and are so grateful of the support they have provided us. Her biologic medication has truly been life-changing and she is a fighter in the truest sense of the word.
We have found comfort with Cassie + Friends as well as online Facebook groups for support. We participated and raised funds for JA last year during their annual walk and plan to again this year. We were also fortunate enough to receive an injection support kit from Cassie + Friends. This was just one of the many ways we’ve felt supported by this amazing organization. One of the most powerful lessons I’ve learned from this whole process has been the power and impact of community.
While Juvenile Arthritis may always be a part of our lives, it doesn’t define my daughter. To all families affected by a chronic illness, know that you are not alone. There is support in community, and our kids are so much stronger than we could possibly imagine.
-Jordan Horodziejczyk, Olivia’s mom
