By Bobbi Vire, Claremont, N.H., on her son Josh, 11, who was diagnosed with systemic JIA at age 6
When I was pregnant with my son Joshua, I envisioned many things for him. I imagined he'd be smart and funny like his dad, tall and athletic like his aunts and uncles, kind and generous like his grandmothers, funny and mischievous like his grandfathers and if I was lucky, perhaps artistic like me. The possibility that he'd be anything but healthy never crossed my mind.
During my pregnancy, I did everything right. I ate well, exercised, and always took my vitamins. I read to him in the womb and played classical music. When he was born, he was just as perfect as we'd imagined. All too quickly he was starting kindergarten. He was the picture of health, a precocious little boy with blue eyes and a halo of blond curls.
In the spring of 2009, just before his sixth birthday, all that changed when Josh started complaining about leg pain. Soon he developed fevers that got as high as 106°F. We went back and forth to the doctors and were repeatedly told not to worry, it was just a virus. His symptoms continued to escalate though, and soon he was no longer walking due to the excruciating pain in his legs. He became lethargic and was immediately admitted to the children's hospital. Dozens of doctors ran a battery of tests including bone scans, MRIs, and even a bone marrow biopsy, in addition to repeated blood work and lab work. After months of waiting and worrying, we got the diagnosis of systemic juvenile idiopathic arthritis (sJIA) in the fall of 2009.
We'd never heard of this disease before and were overwhelmed in the beginning by all the possible negatives that went along with the disease. Josh immediately began taking naproxen and methotrexate injections, which helped immensely. After 2 years he was pronounced in remission but it only lasted a week. This time the old meds didn't work. He was once again using a wheelchair and this time almost all of his joints were affected. They added Enbrel injections to his meds and finally he responded. Within a year he had his range of motion back and was running and jumping like other kids.
Now almost five years later, Josh looks like a normal boy. He's currently in remission and has been taken off everything but the Enbrel. He cannot play sports because any injury results in a flare to the affected area, so instead he reads voraciously and dreams of becoming a doctor to help kids just like him.
The impact to our family has been overwhelming at times, especially in the financial sense. We had to file bankruptcy because of the hospital bills and it's been hard emotionally for all of us, most especially my younger daughter who has often had to take a back seat, attention-wise, to her brother. I have had to continually remind the staff at Josh's school that arthritis is not just for the elderly and that just because Josh looks normal on the outside, he does require some modifications to his daily routine.
Through it all though, we've persevered. We take part in the various fundraisers our local Arthritis Foundation office puts on. Josh attended his first arthritis camp last summer and met kids just like him for the very first time. He remains optimistic that they will someday find a cure and for his sake and all the other families dealing with disease, I pray he's right! He inspires us every day with his strength and courage and we are all so incredibly proud of him!