Friends With FOP

Posted by Karen

Guess what folks, I’m a writer…  This week, a piece I authored about Miranda and Fibrodysplasia Ossificans Progressiva was published in “Today’s Kids in Motion”, a Canadian magazine about kids with disabilities and special needs.  OK, so this magazine doesn’t have a huge readership – it goes mostly to pediatricians’ and family doctors’ offices – but still!  Feels very cool.

Several months ago, my friend Carrie Connell, who is also the leader of our Canadian FOP Network (www.cfopn.org), found out about Today’s Kids and noticed that they have a section in which they highlight a particular child and his or her medical condition.  Carrie suggested to me to approach them about FOP, so I figured why not?  I did so, and they were interested in having me put together an item for their use.

The article I wrote is general in nature.  It introduces FOP, and provides the basic information about the medical aspects in layman’s terms.  It also talks about the emotional and social challenges our family faced when we got the FOP diagnosis.  Last but not least, the article also describes our Miss Miranda.  Here’s a link, which I hope will work:

http://www.bluetoad.com/publication/?i=57147&p=18

Most likely, a few dozen people will read this article and think hmm, interesting and different.  Probably nothing much else will come of it.  But – it might just stick in the back of someone’s mind…   And what if, several months or even years from now, that person meets a kid with crooked big toes, or maybe with unexplained swellings, and then that person thinks, what was that genetic thing I read about??  It could lead to a diagnosis, and another child with FOP could be saved from innappropriate and harmful medical interventions and set on the path to as healthy a life as possible.  Wouldn’t that be something.  I’d probably never know about it, but I feel good about even the remote possiblity it could happen.

Another more general thing I wanted to do was show that even if your child has a challenging medical diagnosis, she can still lead a good life.  I wanted the article to have a positive outlook, and maybe give some encouragement to other families dealing with difficult health problems.  I think I managed to do that.

Finally, I also enjoy writing about and showing off my kids, so that was another good excuse to write the article.    I think my Miranda is one great kid.

Here’s Miranda and her tongue, being silly at a recent school field trip.  What a monkey!