October 7th, 2017

Claremore Expo


Zip has just turned 10 years old, and will be going into 4th grade at Westside this fall. The onset of the flareups caused by FOP was just about 6 years ago. His neck and spine have been fused. His shoulders are what the call "pinned". This means he has movement, but it is quite limited. He has a "ribbon" of bone on his left bicep leaving his arm in a cocked position when resting. The remaining flares have left a mountain range of bone on his back, but have not limited mobility any further.

We have resumed a life with FOP as a part of us. It is not ALL of our family, but an integral part of our family. Sure we can’t do some things, but there are a lot of things we CAN do. I am grateful everyday that we figured out what it was. Can’t solve a problem if you don’t know what the problem is. We can control it to some extent and will do our best to do that. Some things are out of our control and we will live with that too. We have such great support. Family, friends, Doctors are all willing to help and try to learn.


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