Today, April 23rd, marks the anniversary of the day the mutant gene that causes FOP was discovered. On April 23rd, 2006, the doctors discovered the gene that causes Fibrodyspasia Ossificans Progressiva. FOP causes muscles, joint, and connective tissue to turn to bone, eventually creating a second skeleton. The rare condition is 1 in 2 million.
The Gordons joined the FOP family on July 28, 2011, when Zip was diagnosed. We dug in and tried to absorb what all of it means to our lives. I’m proud to say that almost three years in, most days I feel like we have a pretty good handle on what it means. It is part of our family’s soul, but we try to live life to the fullest. But let me tell you. It’s always there. Lurking.
We had a year and a half of flare ups (bone building sessions) right during/after diagnosis. Zip’s back is completely fused, shoulders are ‘pinned’, left elbow is affected. Our FOP ‘bear’ has been sleeping for about a year and a half. While this is great, it leaves a pit in your stomach because you never know when it will return.
Tuesday night, our family went to the West Bend Green Block Party. Zip ran and played and even rode a Segway.
24 hours later, he was walking through the garage when he tripped and busted his head open. See, because of FOP, falls are a great danger. When he falls, his arms can’t stop him from hitting the ground. Now, 14 stitches later, he is snuggled beside me in bed. Prednisone already started. Hoping to keep FOP at bay.
The gene discovery in 2006 has led to amazing things. Clinical trials for a promising drug are now underway for FOP’ers 15 years old and up. The day will hopefully come (sooner rather than later) that we don’t have to worry about FOP with Zip or any of the others affected. Our family is forever grateful to the doctors, FOP families, our families, and our community for support.
Please donate to the IFOPA and put ZipperQ on your calendar. ZipperQ4 will be returning to the West Bend Green on October 3rd.
-by AG
