On the morning of March 2, 2021 Ava woke up crying, an occurrence that was far from normal for her, as soon as I picked her up she stopped. Thinking that she had had a bad dream or been startled by something I took her downstairs to start our day. It wasn’t until I put her down to play that I realized something was very wrong. Ava’s knee was so swollen that she was unable to walk. Alarmed that an injury had occurred I took her to her pediatrician, who then sent us to a pediatric orthopedic. To my surprise there was no injury. A few days later the swelling was gone and her ability to walk returned. Shocked at the events of the previous few days, I couldn’t help but feel relieved, my girl was ok. Relief quickly turned to worry when a few months later the exact same thing happened to Ava, this time she was referred to a pediatric rheumatologist. I remember that first appointment vividly; doctors, nurses and medical students filled the room all trying to figure out what was happening to Ava. The next day I took her for her first blood draw, three sticks and a lot of vials of blood later we were finished. To say she was a trooper would be an extreme understatement. A few days later her results were in, she tested positive for Lyme Disease. She was treated with antibiotics and ibuprofen, it didn’t take long to see improvements in Ava. Over the next few months the swelling subsided and her bloodwork returned to normal, she was better. In the beginning of December 2021 we had our last rheumatology appointment, we were in the clear. Or so we thought. As the holiday season ended, so did our hopes that Ava was ok, the swelling returned to her knee. We returned to her rheumatologist, and after another round of bloodwork we received the diagnosis we had been terrified of, Ava had arthritis.

Two years ago Ava’s journey took another turn as her diagnosis was changed for polyarticular JIA to systemic JIA. The treatment for her arthritis is not easy, in addition to daily medications at home, every two weeks Ava has IV infusions done at the hospital and one injection at home. Her labs are trending in the right direction, but she still has weakness, pain and swelling in her joints several days a week. While everyone’s journey through arthritis is different, Ava’s lately seems to be more complex. We are forever grateful for her amazing, and extensive, team of doctors, nurses, therapists, teachers, coaches, friends and family who are always on her side, encouraging her to keep moving forward, even when its not easy.

It has been 3 years since Ava’s diagnosis, more than half of her life. Simple things like playing or going to school often cause a lot of pain and some days the most she can do is lay under her blanket and just watch. Doctors offices, labs, hospitals and injections have become normal parts of her day. Shortly after her diagnosis, the Arthritis Foundation sent Ava a JA Power Pack. In that pack was Champ, the cutest teddy bear that can be warmed up to help soothe sore, achy joints. Champ has been there for Ava through many long days and nights, he is one of the ways I know how she’s feeling without her having to say anything. If he’s keeping her bed warm, she’s feeling good, but if I find her walking through the house with him, I know that she’s hurting. Little things like this make life with arthritis a little easier to manage.

Life with arthritis is much like riding a roller coaster, some days are filled with happiness, laughter and smiles while others are burdened with pain and tears. As a parent it is unbelievably heartbreaking to watch those highs and lows. Like many other things in life there is no instruction manual that you get when your child is diagnosed with arthritis. A whirlwind of emotions overcomes you all at once, almost incapacitating you, while at the same time your child is looking to you to know what to do and how to cope. Ava has been through so much during these past couple of years, but she puts on a brave face through it all, she is a true warrior. I don’t know what the future holds for Ava, but I do know that we will always be able to rely on the support of our medical team, family, friends and the Arthritis Foundation.