Joe's Story

Hi, my name is Jody. My friends call me Joe. You can too!  I was first diagnosed with MHE when I was seven.  I am almost 12 now. I had my first surgery soon after I was born, but it was not for MHE, it was for a birth defect caused by Amniotic bands.  These "bands" wrapped around a few fingers on my left hand and stopped the growth of two fingers (I lost a few digits), and they wrapped around my right leg above the ankle. This caused my foot to be VERY oversized and a little disfigured.  I had six surgeries altogether to fix these up.  The surgeries for my MHE problems began six months after I was first diagnosed with it.  I have had operations on my fingers, my knees, my ankles, and  a surgery to block the growth in my legs so the shorter bones could catch up.  I have around twelve scars, and I know there are more to come.  Soon I will have have an operation on my wrist and my fingers.   One thing I am really grateful for is that I can still write well, even with crooked fingers!

I love to draw and make my own cartoons.  Even with bumpy bones you can still find something you are good at and try to excel in it.  My doctor at the Shriners Hospital for Children in Chicago has just given me the okay to play football.  I may not run real fast, or even get to carry the football in for a touchdown, but I will block the other team the very best that I can. I am determined to do the things that I can't do well, until I cannot do them at all.  Everyone is afraid to be different and to have surgeries, but you get used to these things in time.  Be the best you can be.  If you ever need a friend to listen or to share with, feel free to e-mail me.

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