• 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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San Francisco family conference

December 10th, 2017

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I spent last weekend in San Francisco! Well, really I was in a hotel the whole time, but the hotel was IN Frisco... Why was I there? It was for the IFOPA's 2017 Family Conference. This was a chance to learn the latest on Fibrodysplasia Ossificans Progressiva, and maybe more importantly, to connect with friends in the FOP community. The conference went from Friday evening through mid-Sunday. Sadly it was just me from my family; husband and kids stayed behind (we had just WAY too many expenses this year, what with moving and so forth, for us all to go). I flew ...

November at our house

November 26th, 2017

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Hi friends. Sorry about not posting the past couple of weeks; things got in the way. But anyway, here I am, and here's some recent stuff going on at our house... Last weekend was a bit of a momentous event. Specifically, Miranda went to a movie last Friday night - with only two friends and NO PARENTS in attendance. This is a typical activity for 12-year-olds in this day and age, so why not Miranda? Fibrodysplasia Ossificans Progressiva shouldn't rob you of all fun. It was actually pretty safe; I drove the girls to the theatre to see Wonder (incidentally, this ...

Miranda’s Halloween – new challenges

November 4th, 2017

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Hi friends, I'm back again! Sorry, didn't post anything for a little while there; was intensely busy with a major work project (now finished). Despite my big work thing going on, I recently enjoyed Halloween with my girl Miranda. At the age of 12, and in grade 7, she figures this will likely be her last year trick-or-treating (age 12 was also her brother's last year, by his choice). I doubt that this will be her last year coming up with a costume, though - she LOVES figuring out a cool costume and getting all kitted out for it. This year Miranda ...

Stealth flares, or bone creep

October 8th, 2017

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Mystery, thy name is Fibrodysplasia Ossificans Progressiva. Indeed, there are so, so many strange and confusing things about FOP. My 12-year old daughter Miranda is experiencing one of those things right now... I call this phenomenon a "stealth flare". It's a flare-up which is different to the norm, in that it's missing many of the usual symptoms and is much more low key (sneaky, one might say). See, when we think of FOP flare-ups, there's typically a constellation of standard symptoms - significant swelling, pain, heat, sometimes skin redness and/or a "vein-y" appearance, and of course loss of movement. Over the years, ...

New equipment at our house – summer 2017

September 24th, 2017

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If there's one thing you learn about life with fibrodysplasia ossificans progressiva (FOP), it's that change is inevitable. Change in body posture, change in abilities, change in range of movement are all to be expected. And, when that change occurs, sometimes the person with FOP needs new aids to promote more independent living. This has been my daughter Miranda's situation in 2017. She developed a left knee flare-up in January, and since that time the flare has snaked its way up and down and around her leg. We think it's finally drawing to a close (or may perhaps even be finished), ...

An artsy summer

September 2nd, 2017

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Mid-spring is when we usually start planning our kids' summer activities. 2017, however, was shaping up to be a real pickle. For one thing, we were deeply enmeshed in selling our house and buying a new place, plus organizing for moving, and it was hard to think about anything else. For another thing, Miranda (age 12) was having the worst ongoing set of flare-ups she'd had since she was 2 years old, as Fibrodysplasia Ossificans Progressiva (FOP) moved its way up and down her left leg for months, and with no end in sight. I'm going to come out right ...

A visit with our friend Erin

August 27th, 2017

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Our Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at age 2. At the time, we knew of no other children with FOP within a 12 hour driving radius. We had on-line connections with FOP families, but still, that was a lonely time. And then, along came Erin... Erin was born the same year as Miranda, a few months later, and was diagnosed with FOP not-quite-a-year after Miranda. And, of all amazing things, Erin and her family live in the Seattle, Washington area, just 3 hours' drive from our home! Needless to say, our two families jumped at the opportunity for a ...

We did the Walk 2017!

August 13th, 2017

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Our Walk for FOP fundraiser was last Sunday, and what a day it was... By way of background, the Walk for FOP is an event held every year in Calgary, Alberta by my family and the family of our friend Kathleen Degenhardt. The event is in honour of my daughter Miranda, who is 12, and Kathleen, who is a young adult; both of these gals have fibrodysplasia ossificans progressiva. The event raises funds for the Canadian FOP Network, a registered charity in Canada which supports FOP research. [caption id="attachment_3124" align="alignleft" width="800"] Erin, Ella, and William spelling FOP with their bodies![/caption] We were ...

Reactions to the wheelchair

July 23rd, 2017

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This has been a spring and summer of so, so many changes for my daughter Miranda. One of those things is that due to Miranda's ongoing left thigh and knee flare-up, her walking has slowed quite significantly, and she has to use a cane. This means she can walk only short distances without tiring. As such, we have started using her manual wheelchair for outings requiring more foot travel. I am the person who usually pushes Miranda's chair, and I've noticed some interesting things while acting in that capacity (NOTE - we are moving toward getting a motorized chair, but that's ...

Stomach problems… Wait, what?

July 16th, 2017

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A few years ago, I started hearing about belly issues in the FOP community. Random things, so it seemed - this person digested food too slowly, that person had frequent nausea, the other person had acid reflux... I wondered whether this might just be coincidental - surely this stuff had nothing to do with fibrodysplasia ossificans progressiva? FOP is all about soft tissue swellings, bones, and progressive limitations. Additionally, stomach issues aren't really documented anywhere in the literature (at least, not that I had seen). Well, I thought, whatever the reason, luckily this wasn't something we were dealing with - ...
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