Posted by Karen - April 12th, 2015

A few months ago, I did a blog post about how it’s not my thing to refer to my daughter Miranda, age 10, as “my hero”, or “courageous “. My point there was that my girl is simply living her life – how could she do otherwise? – and hasn’t done anything super special. While she has experienced much pain and discomfort with flare-ups of her fibrodysplasia ossificans progressiva, as well as physical limitations caused by FOP, she has always reacted PRECISELY in the way anyone would react – that is to say sometimes she’s born the pain and restrictions with patience and good grace, and other times she’s been cranky and whiny. For me personally, referring to someone with a disabling condition as brave or heroic for the sole reason that they’re living with that condition is kind of patronizing, and emphasizes the person’s “difference” in a non-helpful way. I appreciate the good intentions behind such type of commentary, but my point is that it sets the person apart and  doesn’t always have the positive effect that’s intended.

Now all of that being said, I’ve recently become aware of someone with Miranda’s disorder, FOP, who is doing something which requires real guts and courage. Joey Sooch (Sooch is his media name) is a young man who lives in the United States. Joey is a college student, and recently he’s set about making a series of short YouTube video clips about what his life has been like with FOP. His purpose is to raise awareness of FOP, and hopefully in the process encourage donations for research. Why do I find this effort brave?  The reason is that Joey has laid his life bare, showing the reality of what he’s been through. He hasn’t shied away from any of it, from focusing the camera on the obvious extent of his scoliosis caused by FOP, to talking about his hearing limitation (a common problem with FOP, but one which Miranda thankfully doesn’t have) and related speech impediment, to talking about the despair he felt as a depressed teenager living with a terrible disorder, to talking about how his life has been progressively physically limited by new flare-ups.




To go on camera and create a video series highlighting these distressing and painful things is, in my mind, a very, very hard thing to do. Joey has revealed all his own physical frailties, and focused specifically on some hard, horrible stuff. In doing so, he’s exposed himself to the world and accepted that anyone viewing these videos will forever be aware of the extent to which he’s experienced pain and emotional anguish. He’s ripped away the mask he wears in everyday life, the one each of us wears in our own way to cope with our difficulties and smooth our way through existence in society. Doing this kind of thing is extremely difficult, something few of us would ever have the strength to do (or even want to do, for that matter). You may note that in my blogs about life with Miranda, I NEVER show close-up photos of her flare-ups or FOP bones or presume to know how she feels about things, all of which are private matters for her to decide on when she’s older.

Additionally, it’s noteworthy that Joey has also opened his life up to the scourge known as internet trolls, those human cockroaches who seem to think it’s entertaining to go on-line and insult and demean people for showing their differences. Being willing to tolerate the horrific and evil comments made by trolls takes an unbelievable amount of guts. And lest you think this is only a theoretical concern, I am sorry to advise you that the work of trolls can be seen in the comments to some of Joey’s video clips.

So, to Joey Sooch I say: you are a young man with a great deal of courage. I very much admire you and thank you for doing something which takes so much bravery.

If you’re interested in watching Joe’s video clips, here’s where you can get started….

PS – Clementia Pharmaceuticals is currently carrying on a Phase 2 clinical trial of the potential FOP drug Palovarotene. If you have FOP, are 15 years of age or over and have a new FOP flare-up on an arm or a leg, you may be eligible to take part in this testing. Doing so involves some short-term travel to one of three clinical testing sites in Philadelphia or San Francisco in the United States or Paris, France, but Clementia will cover the travel costs for you and a caregiver (even if you require special travel arrangements). For more information, go to:

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