Archive for April, 2012

Rare Disease Foundation gala

April 29th, 2012

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Posted by Karen Last Saturday night, my husband Pete and I went to the Rare Disease Foundation "Rare Finds" gala event.  Holy smokes, it was amazing... Before I tell you all about it, I'll begin by explaining that the Rare Disease Foundation is a Vancouver-based charity focused on, you guessed it, rare diseases.  The organization has two purposes - to provide a local community and support group for families dealing with rare disorders, and to provide "micro-grants" to health care providers and researchers needing just a bit of money to get a rare disease-related care and/or research initiative off the ground.  I've been involved with ...

“You did WHAT??”

April 22nd, 2012

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Posted by Karen We had a nasty little FOP scare this week. On Tuesday, my daughter Miranda went to school as usual, and that day I went to my employer's office (mostly I work from home).  Later in the day, I was walking to the parkade to leave and pick my kids up, and my cell phone rang, but I lost the call as I got in the elevator.   I figured the person would call back, but he or she did not.  I headed on my way. I got to the school and walked over to Miranda's classroom just as the bell rang.  Miranda's first grade ...

5 years ago, the world stopped spinning on its axis

April 15th, 2012

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Posted by Karen April 19, 2012 marks the 5 year anniversary of my daughter Miranda's diagnosis of Fibrodysplasia Ossificans Progressiva.  That day in 2007 was an unbelievably horrible day - easily the worst day of my life. It was also one of those pivotal days where our world changed.  There are a few of those in a person's life - the days when your children were born, the day you got married, etc.  This particular day was one I never expected to have; there was no familial history of FOP.  It's not a genetically recessive disorder which can quietly "run in families", so ...

Easter weekend 2012

April 9th, 2012

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Posted by Karen Today is Easter Monday, which explains why my blog is a day late...  We were busy at our house yesterday with coloured eggs, chocolate bunnies, cooking food and other such Easter-y activities - no time for regular Sunday blogging! I commented last week that my daughter Miranda is like the Energizer Bunny these days...  And that carried on this week too, which is good, as the past few days have been pretty busy. On Saturday, Miranda went to her friend Sara's 7th birthday party at Omega Gymnastics.  My husband Pete went along with her, and he said that Miss M ...

Spring is in the air…

April 1st, 2012

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Posted by Karen Miranda's been totally full of beans lately.  I attribute it to spring!  OK, so I griped a lot about the change to daylight savings time a couple of weeks ago, but since then, Miranda's been a bit like the proverbial Energizer bunny.  Which is just fine - I'm not complaining.   ;-) It probably helps that Miranda's Fibrodysplasia Ossificans Progressiva has been quiet for a while.  She hasn't had any new flare-ups since last September, knock-on-wood-long-may-it-continue-that-way.  In fact, we haven't even had to give Miss M prednisone for any falls or other traumas in a few months either.  Yay!  This is all good. Anyway, ...