Lily's Story

Lily was diagnosed with Oligoarticular Juvenile Idiopathic Arthritis (JIA) just before her third birthday. Months before that she we started noticing that she wouldn't put weight down on one of her legs in the morning when she woke up and often wanted to be carried. After many months of doctors visits, we were referred to a rheumatologist who was finally able to give us some answers. At that time, Lily was having issues in both knees. She underwent steroid injections in both knees. For about a year, we saw very little problems and were hoping the worst was behind us.

Unfortunately, her JIA reared its ugly head again, this time in her ankle. We underwent another injection, but this time it didn't have the same effect. We added a disease-modifying antirheumatic drug into the mix and things stayed quiet for almost two years. Because she was doing so well, her doctor suggested that we try taking her off the medication. We spent several months weaning her off the medication and were able to come completely off of it. Unfortunately, we were only off the medication for a few weeks before her ankle flared. A few more weeks later, her knee flared also. We tried steroid injections again, but they didn't provide any relief. We had to go back on the same medication again, but this time in an injection form. This was pretty scary for not only her, but also us! After giving the medication some time to do it's work, we realized that this medication was not bringing her enough relief. A biologic drug was then added into her medications. For the past two years, Lily has been enduring two injections at home each week. Some weeks, the injections go smoothly and without complaint and then other weeks are full of tears (from her and us)! We are extremely grateful that with these two medications, Lily has found relief and has been able to feel like herself again. We are hopeful that this continues!

Lily was so young when she was diagnosed that she really doesn't know what life without JIA is like. Unfortunately, because she was so young, it was really hard for her to tell us what was wrong or that she was in pain. She didn't have the words to express what she was feeling. We always lived in fear that she was hurting and wasn't telling us. We watched her like a hawk for any little signs of pain. Now that she is 8, she is starting to understand her disease better and is more able to advocate for herself. While she is happy to share her story with others and usually tries to make the best of her situation, she also has moments where it's all just so confusing to her. She doesn't understand why this happened to her and why she has to go through all that she has to go through to feel normal. It's hard for her to understand that in order to keep the arthritis pain away, she has to suffer through the pain of injections every week. She never gives up though and always pushes through. She loves to sing, dance, read, and make others smile. She has the biggest heart and cares so much for others. She is truly the strongest person we know. We have no idea what the future holds for our little super hero, but we know that she was given this struggle so that she could use it to make a difference in the world!

Watch the video below to hear a message from Lily!