Her mom writes “I am positive that there are sicker, more deserving children than my daughter. It is my prayer that if you find one, that you will please immediately disregard this message.
However. . .
Gwendolyn never ever slept as a baby. Not until she was 2.5 and finally medicated for the pain she must have been having daily. After a frantic call from her daycare provider, an MRI and some blood work, Gwen was diagnosed with oglioarticular junior idiopathic arthritis. In plain English, arthritis in her large joints which may also affect her eyes.
She sees a special pediatric ophthamologist four times a year to check for swelling on the optic nerve, which can lead to blindness if not detected and aggressively controlled. She sees a pediatric rheumatologist four times per year. Sometimes, she wakes at night crying because her joints hurt.
At her last doctor’s visit, it was apparent that her knee has started to fix itself in a slightly bent position. Not so noticeable to everyone else, but clear if you are really checking. When she heard the doctor comment about it, she took both hands and forced her leg straight just to prove him wrong. This one. . . Is a fighter!
Our concern is not for what is, but for what may be. The NSAIDS she is on may eventually pickle her liver. Her disease may become more severe and attack her eyes, requiring methotrexate or similar chemotherapy-type drugs to prevent her immune system from attacking itself. Some of this may happen, or none of it. She will get gradually worse with time. Middle age will feel like old age. I regret I will not be able to ease the pain which will come when she is old.
So, here is the thing: she is fine for now, mostly “normal” I guess you could say. But if you knew you might have a harder time when you were older, what would you not do now, when you could? This is the reason for the nomination: to build for her a stockpile of sunny days so that when life becomes difficult, she can still radiate joy.
There is no cure for j.i.a. Gwen will not get better, yet somehow, I know she will fight every step of the way.
Thanks again for making the world a little kinder and more beautiful.”