• An experiment in letting go (a little bit)

    July 1st, 2013

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    Posted by Karen Yesterday we got back from 2 days at Girl Guide Camp.  Yes, I attended with Miranda, the way I did the past 2 years.  There are always a number of mom volunteers, so having one more along for the ride doesn't cause anyone to blink an eyelash.  This year though, we handled it a bit differently than we did in the past... This is Miranda's third year in Girl Guides, and it's necessary for me to attend camp with her.  The girls are supposed to be able to dress themselves and use the bathroom on their own, neither of which Miranda can do ...
  • Stuff leading in to summer…

    June 23rd, 2013

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    Posted by Karen I must say, I am SERIOUSLY looking forward to July...  Because almost all my kids' activities will be finished.  ;-) Between Miranda and her brother Owen, I was seriously run off my feet this week.  Especially this weekend.  Get Miranda's schedule yesterday - first it was the end-of-season softball wind-up, then the end-of-year Brownies picnic, then a classmate's movie/bowling birthday party.  We didn't get home until 8 PM. Miranda was in typical form yesterday - and by that I mean unbelievably full of energy.  Fibrodysplasia ossificans progressiva?  Ha, what's that and why would it make me tired or affect anything I ...
  • I am so not good at…

    June 16th, 2013

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    ...Fundraising.  In fact, one might say that I'm pretty pathetic at it.  Big old lameosaurus, that's me. Yes, I suck at it, and yet I can't throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP). [caption id="attachment_2085" align="alignnone" width="225"] Our dear Miranda, our reason for FOP fundraising[/caption] I blogged last weekend about the Canadian FOP Network's conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective ...
  • Canadian FOP conference, 2013!

    June 9th, 2013

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    Posted by Karen It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore. “It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it.  ;-) So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and ...
  • “LUCKY” to have FOP?

    May 26th, 2013

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    Posted by Karen OK, of course everything's relative.  Obviously I don't mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky. Here's what I mean...  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you're a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a ...
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Miranda and Erin hang out

April 13th, 2014

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Posted by Karen Howdy! I couldn't post on the past two weekends - first was because of travel and second was due to technical difficulties - but now here I am again, full of bloggy goodness.  ;-) Where was I travelling a couple of weeks ago, you ask? In fact, it was to Washington State, where Miranda and I spent a fun, end-of-spring-break weekend with Erin McCloskey, her mom Suzanne and the rest of their family. As I have blogged before, we are supremely lucky in the world of Fibrodysplasia Ossificans Progressiva that our two families live just under 3 hours' car travel apart, and that our girls are the ...

Because I’m happy…

March 23rd, 2014

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Posted by Karen I love, love, LOVE that Pharrell Williams song. I bet chances are pretty good you know it too; it's the one that goes, "Clap along if you know what happiness is to you; clap along if you know that happiness is the truth!" When I hear this song, I find myself tapping along, and wanting to belt it right out. And then it often makes me a bit teary. Which probably sounds totally weird... What I mean by this is that when I think about my family right now - which is, obviously, a huge part of my life - I feel ...

Immunization fears

March 16th, 2014

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Posted by Karen It seems that very year around this time, stories start circulating about local outbreaks of various diseases. Along with those stories come analyses of how these diseases are spreading because some parents are choosing not to vaccinate their children. For me, this is a very scary thing - you see, I CAN'T vaccinate my daughter.OK, to take it down a notch, I should actually say that I can't fully immunize Miranda. I'm sure it won't surprise you to hear that the reason why is our eternal nemesis, Fibrodysplasia Ossificans Progressiva. Why should that interfere? I'll start with a ...

A new cool thing

March 9th, 2014

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Posted by Karen "Mom, when can we go? Can we go now? Pleeeeeease can we go NOW?" Such was the scene at our house on Friday afternoon this past week. Miranda was very, very excited to be going to her first day of... wait for it... gymnastics. Yes, believe it or not, my daughter, who has Fibrodysplasia Ossificans Progressiva, is starting gymnastics. OK, to be more accurate, it's a modified type of gymnastics, with a plan designed just for Miranda's abilities and limitations. The program is called "Empowering Steps", and it operates out of the Club Aviva gymnastics facility in Coquitlam (a suburb municipality in ...

“There’s no treatment for FOP, so what’s the big deal about diagnosis?”

March 2nd, 2014

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Posted by Karen Nope, nobody has ever asked me the question in the title of this post. But, I can kind of imagine someone thinking it... If you didn't know a lot about Fibrodysplasia Ossificans Progressiva, you might think diagnosing more people doesn't much matter - after all, there is no treatment which those folks are missing out on. I wish with all my heart that we DID have a medicine for FOP. There's a good chance we may be there in a few years, but for now, there's nothing. Once FOP has a person in its grips, there's no treatment which will reverse it or ...

Scrumdelicious

February 25th, 2014

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posted by Suzanne Remember this?   That surgery scared the bejeezus out of us.  Oy vey!  Then were told that we may need to go through this again when her adult molars come through (or try to come through I should say).  After the surgery we were catapulted back to the gastroenterology clinic because of  1.  Her weight was low. 2. The dentist recommended a diet of soft foods AND low sugar.  3.  The dentist also thought a NG tube would be needed for Erin to gain weight. It was a hard transition to incorporate this type of diet at home.  Then packing a ...

Rare diseases which you’ve never heard of (or maybe you have).

February 23rd, 2014

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Posted by Karen February 28, 2014 is International Rare Disease Day. Maybe you're asking, what the heck do we need a day like that for?? You don't know anyone with a rare disease. They're RARE, after all. But oh, wait, wasn't there that kid down the block...? And oh yeah, you went to school with someone who had... In fact, between 1 in 12 and 1 in 10 people has some kind of rare disease. That's quite a lot of people, much more than I would have ever imagined before my daughter joined the rare disease community. Individually, there are very few ...

FOP around the world

February 16th, 2014

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Posted by KarenWhenever I hear about a person newly diagnosed with my daughter Miranda's disorder, Fibrodysplasia Ossificans Progressiva, my first feeling is profound sadness for the individual and his or her family - but pretty soon that moves on to relief, because it means another child (it's almost always kids who are newly identified) has the right diagnosis and will avoid the tremendous harm that comes to people with FOP from incorrect medical treatment.  What kind of harm are we talking about here?  Well, consider that FOP is very frequently misdiagnosed as cancer, which leads to surgeries...  And when a doctor cuts into ...

Adapting to limitations

February 9th, 2014

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Posted by Karen I don't know about you, but at our house it's been Olympics, Olympics, OLYMPICS since Friday.  It's amazing and mesmerizing to watch top calibre athletes push themselves and accomplish unimaginable physical feats.  So much fun to see.  But, you know, you have to take a break from watching TV at some point, so here I am. ;-) My daughter with her doll, Leonie, who is decked out in her own figure skating costume. Go Canada! Speaking of unimaginable physical feats - when you have a child with Fibrodysplasia Ossificans Progressiva, you have to get used to seeing things which are also ...

Fundraising for Erin

February 3rd, 2014

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posted by Suzanne It took us a long time to get a vendor appointment at Seattle Children's for a power wheelchair.  We finally got one and met with an occupational therapist and a vendor rep in mid-November 2013.  I was a bit apprehensive because deciding to get a power wheelchair meant that things are going to get "real" for us.  Just the sight of medical equipment is enough to make our stomachs turn.  Then again, I get the same feeling when we discover a new flare-up, a new bony protrusion, or a sleepless night because Erin is in a lot of ...
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