Archive for December, 2009

The holidays, gratitude and almost no FOP

December 27th, 2009

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Posted by Karen Hey everybody, HAPPY HOLIDAYS!  Before I tell you how much fun our festivities have been so far, I want to give a really big, heartfelt thanks to all my friends and family who donated recently to the Canadian FOP Network.  Your donations mean so very much to us...  Research into FOP is largely funded by private donations, since pharmaceutical companies aren't much interested in a tiny "orphan" disease like Fibrodysplasia ossificans progressiva.  And yet, according to the scientists at the Centre for Research into FOP and Related Disorders, the single genetic mutation which causes FOP is a very promising target for pharmaceutical ...

An amazing holiday party (and FOP)

December 20th, 2009

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Posted by Karen OK, so the title of this entry is kind of clumsy.  However, I want to get "FOP" in the title of each of my blogs, so please forgive me.  ;-) Anyway...  What makes a great Christmas party, if you're a kid?  I'd have to say, in no particular order, fun holiday crafts, making gingerbread houses, eating lots of goodies, play time, and, of course, presents!  Luckily for Miranda and her brother Owen, the party we went to yesterday had all that stuff, and more, in spades. Pete and I took our kids yesterday to the Starlight Foundation "Stars On Ice" holiday ...

Ambivalence about a parking pass…

December 13th, 2009

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Last year around Christmas time, our little area of the world had a HUGE dump of snow.  Way, way more than usual, and we dealt with giant snowdrifts and icy roads for multiple weeks.  And, no big suprise here, a couple of times when we went out with Miranda, she slipped and fell while walking across icy parking lots.  I remember at least a couple of times spending several nervous days waiting to see if she'd have resulting flare ups of her Fibrodysplasia ossificans progressiva (luckily she dodged that bullet both times). I remember thinking frequently last year, "GEEZ I wish I ...

Dreaming of no more FOP

December 6th, 2009

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Posted by Karen In this blog, I spend lots of time talking about how our family lives and copes with our daughter Miranda's FOP.  I try to convey the sense that despite FOP, Miranda has a terrific life and is just like any other little girl.  And that stuff is true...  It really is.  I love my little sweetie and have great optimism about her future, just as I do for my son Owen.  Miranda is a wonderful, happy, energetic and bright little girl, and I think she'll have a great life. But...  The fact that we've integrated Fibrodysplasia ossificans progressiva  into our lives, ...