In July of 2011, our family received the diagnosis that my son, Zip, had FOP. Fibrodysplasia Ossificans Progressiva is a rare genetic condition affecting only 1 in 2 million. Only about 800 people worldwide have the condition that turns muscle, tendons, ligaments and joints to bone. It creates a second skeleton over time, trapping the patients within their own bodies.
It’s really hard to get your mind around.
Our family had been through a lot that summer and we decided to get away for a week in the hill country of Texas. We rented a house with a pool and just wanted to escape and absorb the diagnosis.
For my 30th birthday, I had made a resolution to myself to become more high maintenance. Take time for me. Get my hair done, get my nails done. You know, girl stuff. Stuff a mom sometimes doesn’t take time to do.
Before we left, I headed out to the salon to get a pedicure. I picked the orange color that has graced my nails for the past four years.
Now, I know it sounds silly, but some of my friends refer to it as Amy Orange. I’ll let you in on a little secret. Still today it is a reminder every time I look at my nails that my son has FOP. That my family is dealing with FOP. A reminder that we will work and work until they find a cure for this disease that haunts my boy.
The way we work is to host ZipperQ. It will be Saturday, October 3rd, at the Claremore Expo from 3p – 7p. The event is free to attend. There will be BBQ tasting kits for sale for $10, ZipperQ shirts for sale, the chance to win a new CAR and more. We are currently recruiting items for the live and silent auctions.