Fibrodysplasia Ossificans Progressiva (FOP) entered our lives a little more than three years ago. It was a game changer for sure. Time is the one thing that helps us through it. The one gift we have for now with our boy, Zip.
During the past two years, I have had the pleasure of talking to Zip’s classmates about the condition. My favorite part of the speech is when I get to say “Supercallifragilisticexpialidocious!’. This went over much better with first-graders than kindergartners. FOP is one syllable shorter when pronounced in full than the famous Mary Poppins word.
FOP is a rare condition that is 1 in 2 million and is known to affect about 800 worldwide. The crazy gene turns muscle, connective tissue, and joints to bone.
I have had the opportunity to speak many times over the last two years about FOP. Now it seems that the previous fact statements flow right off my tongue. Like I am saying something simple that everyone should understand. Sometimes, I find my self saying it with a straight face and completely pulled together, rather emotionless. The look on the faces of those I’m speaking to are looks of sheer horror. Did she really say that? Did she just say it turns to bone??
Yes, my friends. My precious little 7-year-old, Zip, is creating a second skeleton. His body is flaring at times of its choosing and locking him in the position of his body’s choice. There is no cure. He’s locking up.
These are facts I know and our family lives with but try not to dwell on. We are hopeful that doctors will find a cure soon. They discovered the gene in 2006 and that launched the FOP community light-years ahead of many other rare diseases. It has led to a clinical trial that started in August of this year. Dr. Kaplan says there is much more low-lying fruit to focus on. He means a cure is possible in Zip’s lifetime.
Zip lost most of his mobility (neck, back, shoulders, left elbow) in the initial flareups of 2011. He had about 18 months of continuous flareups that ravaged his back and made mountains of bones. We have had about 18 months of quiet, but it seems the bear may be awake again.
I present and speak and fundraise and people tell me that they don’t know how I do it. But let me let you in on a little secret.
I hate FOP.
I hate it with every ounce of my being.
I don’t even let my kids use the word hate. There are many other words to choose from. That’s what I always tell them. But you know what? Some days hate is the only word for this crazy disease.
When my kids ask me what I do at work, I tell them that I solve problems. That’s fun for me. It’s fun to be able to be a part of the solution. It’s fun to be able to lead and connect people until we figure it all out. But this problem is bigger than me. It’s bigger than my family, or friends, or work team. It’s going to take all of us.
Saturday, October 4th, will be our third ZipperQ. It’s our way of fundraising to support research for our boy.
Our community and friends have stood behind the cause the past two years and the event has grown. We are grateful to have such a wonderful team putting the event together. This year will be bigger and hopefully better than ever. No piecrust promises from our team. They’ve all showed up month in and month out and helped us plan and grow.
ZipperK will start at 3:00p (registration at 2p if you haven’t yet).
ZipperQ will have events from 3-7p at the Claremore expo West Bend Green:
BBQ tasting 4-6p
Beaven’s Martial Arts demonstration 3:40-4:10p
Live Music 4:10-6p
Silent auction 4-7p
Live auction 6:15p
Winner’s Choice Vehicle Raffle drawing 6:45p
Free Kids Games 3-7p
Dunk Tank 3-7p
Photo Booth 3-7p
Let’s bring a little bit o’magic to the West Bend Green this Saturday.
It’s easy! Let’s see….You think. You wink. You do a double blink. You close your eyes…. and jump!