Friends With FOP

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 "ultra-rare" disorder - one of the rarest of the rare. A rare disorder like FOP barely registers on the public consciousness, if at all.  Families of those affected can't, and generally don't, expect widespread levels of concern about our disease.  FOP, however, is hardly the only ...

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!  Vancouver is completely consumed by the Olympics at the moment, and our family has gotten right into the thick of it. Everything Olympic-related these days is glutted with people.  Huge, unbelievable crowds...  Doesn't sound so very good for a family with a 5 year old who ...

Posted by Karen A few weeks ago I blogged about trying to find some good group-type activities for my gal Miranda, who has Fibrodysplasia Ossificans Progressiva.  I'm glad to say we got some stuff sorted out... I believe I mentioned that I signed Miranda up to begin "Kindercooking".  This is a class for 3 to 5 year old kids, and they go once per week - every Friday from 12:30 PM to 2:30 PM.  The class is at a community centre.  At Kindercooking, the kids first get about an hour of play/art time, where they do typical preschool sorts of things, and then ...

Posted by Karen Of course, the purpose of this blog is to discuss all manner of stuff connected to my daughter Miranda and her Fibrodysplasia Ossificans Progressiva.  As such, I usually only mention my son, Owen, in passing.  I think it's time I rectify that a bit and tell you about Owen, and how FOP affects his world. Owen was born on January 28, 2002, which means he just turned 8 years old.  Owen is tall for his age, blond like both his mom and dad at that age, and his worst health issue is a lazy eye inherited from his dad ...