Thursday, April 19, 2012

Systemic Onset Juvenile Idiopathic Arthritis

On March 2nd, 2012 a simple name turned our world upside down.  Our sweet five year old went from happy, healthy and active

to this:

Systemic Onset Juvenile Idiopathic Arthritis was the diagnosis.  This after four weeks of fever and rash that included two weeks in a hospital admitted for "fever of unknown origin". 

She never complained of any joint pain.  She had never been in the hospital (except when she was born) before and we had never had such an ill child to care for.

In all she was in the hospital for 57 days.  Spent two weeks of that in the Intensive Care Unit, received 11 x-rays, 6 ultrasounds, a PET CT scan, a spinal tap, a bone marrow biopsy, daily blood tests for one month, four IVs, had a PICC line placed, wore a NG tube for two days, underwent one blood transfusion and left the hospital with four new medications one of which is a daily, painful, subdermal injection.

As a parent there is no way to prepare.  This does not run in either extended family.  This is not cancer.  There is no cure.

Before SOJIA my daughter loved going to the playground.  Yesterday I took her to the playground after being out of the hospital for a week.  I thought watching other children play would motivate her to play.  She couldn't climb up the stairs to the slide.  She could barely peddle the tricycle around and couldn't do it without help.  She spent most of her time in the infant swing watching other children play.  I don't know if she yearned to play with them, but I know I yearned for her to play with them.

Systemic Onset Juvenile Idiopathic Arthritis
AKA: Still's Disease
AKA: Juvenile Rhumetoid Arthritis 
Three names that mean the same to us a future forever changed.

Thank you for visiting our story.  We hope to raise awareness about this and look forward to a cure someday.

1 comment:

  1. Many children suffer due to Juvenile rheumatoid arthritis disease. Proper care and medication can help them.

    ReplyDelete