• 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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When to use the wheelchair?

December 14th, 2014

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Until May of 2014, my daughter Miranda had unbelievably good stamina for a kid with fibrodysplasia ossificans progressiva. Despite having quite a bit of FOP bone in her torso and arms, she could just go and go and GO and almost never needed to rest. But... Ever since my girl cracked her tibia (shin bone) after tripping on a chair this spring, and subsequently developed a piece of new bone in her left calf muscle, that golden period has been over. Yes, Miranda can still ambulate, but the need to walk on the ball of her foot makes her left ...

The FOP drug development forum

December 7th, 2014

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One of the hardest things about having a rare disease, generally speaking, is that there are few scientists interested in researching treatments for such ailments. If you're a keen medical science researcher itching to make your mark, chances are good that you'll end up working on something like cancer or diabetes, diseases affecting millions of people. And yet... Interestingly - and awesomely, I might add - there is an almost shockingly big number of researchers working on fibrodysplasia ossificans progressiva, my daughter's condition. In this way, FOP is very much an anomaly among rare disorders. Considering that FOP affects about 1 ...

Miranda’s gear, circa 2014

November 30th, 2014

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I've said it before - people with fibrodysplasia ossificans progressiva can do many of the things "typical" people do, but just maybe a bit differently. Sometimes that means using various tools, implements or special types of furniture. Recently we've encountered some good innovations in this regard, so for today's post, I thought "why not round up some of the things my daughter Miranda uses?" So, starting from maybe oldest to most recent, here are some useful bits and pieces we've gathered over the years... From the time Miranda was 3 years old, her arms have been quite restricted by FOP bone. ...

That first FOP moment…

November 23rd, 2014

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A short time ago, I got to know a family with a child who had been recently diagnosed with fibrodysplasia ossificans progressiva. As it happens, the FOP diagnosis coincided roughly (say, within about a year) of the child becoming noticeably symptomatic with FOP flare-ups. As often happens when I learn of new families, my internal musing turned to the fact that there are definitely a few different ways families experience the FOP diagnosis. It is absolutely NOT the same for everyone... For me, this is yet another one of the strange and fascinating things about FOP. My family's experience was pretty ...

Cupcakes, hockey, choir and Guiding

November 16th, 2014

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So last week, my blog post was about the super-exciting fibrodysplasia ossificans progressiva drug trial going on right now - something which gives parents like me butterflies to think about (to quote my friend Paula). As I've said so many times, an effective and safe drug for FOP just can't come soon ENOUGH. But... The reality is that an approved medicine - and I'm assuming such a thing will ultimately be available - is still years away. There's lots and lots of testing, lab work and so forth still necessary before we reach that point. In the mean time... Well, ...

FOP drug trial is on! What does that mean??

November 9th, 2014

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It's actually happening. Taking place. Occurring right now! Yep, a trial of a possible drug for fibrodysplasia ossificans progressiva is underway. For me, this is exciting beyond words. It's something I've been waiting for since my daughter Miranda was diagnosed with FOP in April of 2007. Many people who have donated to my family's annual FOP fundraising drives may be wondering what the scoop is. Also, maybe some folks with FOP are wondering if they can get in on the trial, but they're not sure if they can. What are the particulars? How is this being carried out? Who gets to participate? Well, I'm about to answer those questions. ...

Camp, teeth and Halloween

November 2nd, 2014

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A subtitle for today's post could be, "or, what we've been up to lately"... Starting with camp - yes, we went to a camp in October, last weekend (hence my no blog post). This is actually the same camp that Miranda and I attended last year along with our buds Suzanne and Erin McCloskey. Camp Korey, a fab summer camp for kids with special needs, does a family weekend camp in Ocotber, and this was our second year there (this year joined by Erin's aunty Ginny). Just like last year, they hooked us up with a terrific "family pal" who went everywhere with ...

Thanksgiving and FOP (?!?)

October 13th, 2014

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Posted by Karen Today is Thanksgiving Day in Canada. This afternoon, my family and I will be stuffing ourselves full of the requisite turkey, sweet potatoes, pumpkin-y desserts and the like... Awesome. Am drooling in anticipation. Of course, in addition to EATING, it's also traditional on Thanksgiving to think about all the things one is thankful for. And as this blog is all about life with fibrodysplasia ossificans progressiva, my post today is going to feature thankfulness in connection with FOP. Yes, I realize that seems like a contradiction in terms, but honestly there are so many people I'm thankful for in this regard. In no particular ...

Stairs and shoes

September 28th, 2014

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Posted by Karen Once upon a time, there was a young couple on the hunt to buy their first home. They concluded pretty quickly that in their town, Burnaby, British Columbia, a townhouse would be the most affordable option. And so, they found and were delighted to purchase a pleasant 1800 square foot townhouse. A couple of years later the couple had their first child, a bouncing baby boy, and then 3 years after that, a lively baby girl arrived. Everything was perfect - the family lived in a modestly spacious and comfortable home with a school nearby, and everyone was happy. And ...

A typical September

September 21st, 2014

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Posted by Karen The teachers' strike/lockout in our province is now over, so it's FINALLY back to school for my kids. Yes, it's really starting to look like September, down to the last detail... Including a new flare-up of my daughter Miranda's fibrodysplasia ossificans progressiva. It happened last year, and also two years before that (OK, skipped the year Miss M was in grade 2). Why flare-ups just at back to school time? I really have no idea. It's probably just fluke, but there you have it. Last year at this time it was a right knee flare, which left Miranda with the ...
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