Posted by Karen - March 29th, 2015

On Friday night I took my daughter Miranda, who is 10 years old, to a movie. We went to the concession, got some treats (some of which Miranda was carrying), and then headed toward our theatre. The cinema is one of those megaplexes with 18 theatres, and ours happened to be at the far end, so we had a bit of a ways to go. So anyway, we were walking along when all of a sudden, Miranda caught her toe on a bit of carpet which was sticking up. She sort of lurched forward, and… *ALMOST* fell, but was able to catch her balance and righted herself.

Holy mother of God, in that moment when Miranda stumbled – and I’m feeling nauseated right now even thinking about it – I felt the extreme horror that only the parent of a child with fibrodysplasia ossificans progressiva can feel when faced with imminent disaster.

Let me now back up… As I have mentioned in the past, FOP has done a serious job on Miranda’s arms and shoulders. Due to FOP bone, Miranda has almost no movement remaining in her left shoulder, and very little in the right shoulder. To top it off, she also can move her arm at the right elbow very little (meaning it rests in a bent position) and her left elbow only moderately more than that. And, of course, don’t forget all the spinal fusions which have resulted in M having no ability to twist her spine. The cumulative effect of all these FOP restrictions is that Miranda has no ability to move her arms and/or torso when she falls forward, meaning that when it happens, she falls like a tree and takes the brunt of the fall on her face and forehead. Major facial disfigurement, concussion and serious FOP flare-up risks, all rolled into one fun-filled experience… Gah. Falls actually used to happen a lot when Miranda was a young child, so much so that we pretty much didn’t take her onto non-carpeted or other non-soft areas without her wearing a protective helmet. In fact, to this day Miranda’s school still requires her to wear her helmet when walking down hallways between classes and in the schoolyard.

Miranda in her rockstar pose - c'mon world, give us what you've got!

Miranda in her rockstar pose – c’mon world, give us what you’ve got! This is one of my fave pics of Miranda wearing her helmet (circa summer 2013, I think)

Over the last few years, however, Miranda’s incidences of tripping have gone way, way down, so much so that by about age 8, we started letting her go without the helmet most of the time (except for school as noted above). Since we began doing that, I confess that I’ve relaxed quite a bit. I no longer fear – as I did before she was maybe 5 or 6 years old – that Miranda is going to fall every bloody time we take her out somewhere. These days, things are good in terms of this tripping business… Except for that once in a blue moon when it happens.

Which brings me back to the present. At the moment when I realized that Miranda had tripped over her toe, my body went into full blown panic mode – not unlike what I would expect any parent to feel if, say, her or his child was suddenly attacked by a ferocious wolf. My heart jumped right up into my throat and ramped its speed to double pace, and adrenaline shot like lightening through all my limbs. I was about a millisecond away from dropping my popcorn and plowing ahead (probably hopelessly) to try and grab her before she could hit the floor, when I realized Miranda had somehow managed to catch herself. Oy yoy yoy…I had to stop right there for several seconds and let my heart and breathing rates return to normal before we could move on. The experience was literally painful (but of course, better me than her re: pain).

I haven’t felt pure, unadulterated terror like that in a long, long time. Seriously knocking on wood that it doesn’t happen again for an equally long while.

We like the beach a lot... Because, y'know, nice, soft, forgiving sand.

We like the beach a lot… Because, y’know, nice, soft, forgiving sand.

PS – Are you age 15 or over and have FOP? Do you have a new flare-up on an arm, leg, hip or shoulder? If so, you may qualify to take part in current testing for the potential FOP drug Palovarotene. It involves some short-term travel to either Paris, France or else Philadelphia or San Francisco, USA, but all travel expenses are paid by Clementia, the company carrying out the testing. Don’t worry if you have special travel needs due to FOP; Clementia can usually make it work. For more information, go to: and follow the link.

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