Friends With FOP

Posted by Karen

A week or so ago, a friend of mine posted on Facebook that she was doing that exercise where you think of a single word which best describes what you hope for/want to achieve this year.  I thought about that, and had an immediate response.  The word I thought of?  Confidence.

I pondered this a bit, and realized that I can think of lots of ways in which confidence will assist in my professional and personal life, and it also fits very well in the context of dealing with my daughter Miranda’s Fibrodysplasia Ossificans Progressiva.  In fact, the word “confidence” is another way of stating the second half of my personal philosophy regarding FOP:  “plan for the worst, but believe the best can occur”. 

The “worst” is pretty bad…  If FOP takes its natural course, Miranda’s hips will fuse, such that she is permanently locked in either a sitting or standing position.  Her wrists and the rest of her remaining elbow movement (lots of it is gone already, thanks to FOP) will be lost, making her unable to do much with her arms.  Her jaw will be frozen in place, making eating difficult and possibly requiring the removal of teeth.  Worst of all, FOP bone can so restrict her chest movement that her lungs become compromised and her lifespan is shortened.

As I said, all of that is horrible.  If I walked around thinking about it all the time, I’d lose the ability to function as a rational adult.  Instead, I choose to accept that those possibilities are out there, and accept that we may have to deal with them, but to focus on what’s good about our situation and have CONFIDENCE that things will continue that way.  There are so many reasons for confidence…

First, it looks likely that our FOP experts are going to figure out how to crack the FOP nut.  In fact, they’ve already done it at the laboratory stage, and they’ve even succeeded in doing it in multiple ways.  2010 and 2011 were chock full of new scientific studies having been released in which various scientists announced discoveries of new medicinal compounds which largely or completely block the effects of the FOP gene.  OK, so none of that stuff is at the stage of human testing yet, but much of it is clearly headed in that direction.  It could very well be that within a few years, there will be a drug available which neutralizes FOP, and Miranda will get to avoid all the really bad effects of advanced FOP.  I can have confidence the research will continue, and I need to remember that when times are difficult.

Second, I have a great kid who adapts well to new circumstances.  Can I have confidence that she’s going to continue to thrive in school and socially?  Absolutely!  Miranda’s been such a champ this far; I can’t think why this wouldn’t continue.  Miranda loves school, is engaged in learning, is taking piano and art lessons (the latter to begin next week), has friends she plays with, and has a fun, gregarious personality.  I think this girl will go places.

Third, the world is a changing place.  New technological advances mean that people with disabilities have ever increasing likelihood of being able to work and otherwise engage meaningfully in society.  This isn’t the world of 100 years ago, when it wasn’t uncommon for a person with FOP to either stay permanently at home with no social contact, or to make a living by joining a circus freak show (yes, this happened).  Even if the worst happens, and FOP continues to affect Miranda unchecked through her life, she can still have a great life.

Miranda, age 6 in 2011 - a kid with a great future!

Confidence.  Yep, that’s my word for 2012.  If you’re challenged by FOP or something else, do you have another good word for 2012?  I’m curious, so leave a comment and let me know…