Posted by Suzanne
Once again life has a way of getting in the way of me staying on top of this blog.  Our family has had a rough 2010 so far.  Beginning on the morning of Christmas 2009, we received a phone call that my father had three heart attacks within an one hour time span.  [...]

Posted by Karen
Today I’m going to talk about Fibrodysplasia Ossificans Progressiva on television.  People with FOP have been on TV a number of times over the past several years.  Mostly it’s been on news or educational-type shows, but there was an occasion when a made-up character had FOP.
The fictional character appeared on an episode of Grey’s Anatomy.  [...]

Posted by Karen
After my blog on websites related to Fibrodysplasia Ossificans Progressiva a couple of weeks ago, I realized there were a few I left out.
I did mention one Dutch site, and there is a second one as well.  The Dutch FOP group has a site at www.fopstichting.nl.  Additionally, there’s a German based European FOP [...]

Posted by Karen
This was a really busy week for Miranda.  It started out last Sunday with a birthday bash for a friend, who invited both Miranda and Owen to her party at a local gymnastics club.  At first I thought this might not be such a good place for a 5 year old with Fibrodysplasia Ossificans Progressiva, [...]

Posted by Karen
Very recently, an adult friend of ours with FOP started his own blog.  I’m seizing this opportunity to tell you about it and also about some other websites and blogs featuring Fibrodysplasia Ossificans Progressiva.
The guy who started the new blog is called Nick Mahler.  His blog has a great title - “The Crooked Guy”.  The [...]

Posted by Karen
When my babies were in diapers, I couldn’t WAIT for the day they’d finally be out of them…  Especially when they were big strapping toddlers and would kick, struggle and protest during the changing process.  Ugh, not a fun part of parenting kids that age.
With my older child, Owen, everything went pretty much as [...]

Posted by Karen
When your child has just been diagnosed with Fibrodysplasia Ossificans Progressiva, you hear a whole lot of doom and gloom…  “One of the most disabling disorders known to mankind”, “horrific disease”, blah blah blah.  All that stuff is very, very hard to take.  You feel like your child has been handed some sort of [...]

Posted by Karen
My kids love their grandparents…  Love love love ‘em.  Lucky for Miranda and her brother Owen, they have a full set of four.
Grandparents can be a terrific part of any child’s life.  However, I think that when the child has a disorder like Fibrodysplasia Ossificans Progressiva, having gramma and gramps around is all the more [...]

Posted by Karen
Fibrodysplasia Ossificans Progressiva, which affects Miranda and her friend Erin Kate, has a prevalence of about 1 in 1.6 million people.  There are just over 700 people known to have FOP worldwide, with estimates of about 3500 total (in less developed countries, most aren’t diagnosed).  With so few sufferers, FOP is considered an [...]

Posted by Karen
As you may know, our family lives in a suburb city of Vancouver, Canada.  And, as you may also know, there’s a teensy little event going on right now in Vancouver - the 2010 Winter Olympic Games.  Okay…  It’s actually not so teensy; it’s rather a very big whopping deal in our fair city!  [...]