• 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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I’m bored. No wait, I mean I’m ON the board…

January 25th, 2015

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...Of the International FOP Association, that is. Woo hoo! I'm just at the beginning of a two-year term, having been elected this month. As a board member, I'll have to attend regular meetings by phone, as well as go to one "in-person" board meeting per year. The IFOPA is a charitable organization located in Florida, USA, and it's easily the largest FOP group in the world. Last I had heard, the IFOPA has, as members, more than half of the world's 800+ known individuals with FOP. Back in 2007 when my daughter Miranda was diagnosed with fibrodysplasia ossificans progressiva, I knew ...

Miranda at age 10

January 18th, 2015

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My daughter Miranda's birthday was a few days ago. She is now in the double digits! Really, REALLY not a little kid any more. In my last blog post, I talked about all the fears I have concerning Miranda's fibrodysplasia ossificans progressiva, but I ended it by saying that she is worth every one of those fears and more. Following up on that, I'm going to tell you today all about Miranda. First, the FOP stuff... At the end of her first decade, Miranda has a grab bag of FOP limitations. Her bag is rigid and she has some spinal curvature at the ...

Fear

January 11th, 2015

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Sometimes people tell me, "You're so strong; I could never be as strong as you", or similar words. This is, of course, in reference to dealing with my daughter Miranda's fibrodysplasia ossificans progressiva. My response to this well-meaning (but ultimately frustrating) comment is to repeat something I once saw on the internet, which was that you don't know how strong you can be until being strong is the only option.  So am I strong? I don't know if I am inherently, but I've definitely had to become that way due to good old FOP. It's either be strong, or else thoroughly ...

FOP in our world, 2014

January 4th, 2015

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Happy New Year! Here we are in 2015... This past year was, more so than many others, a year of real ups and downs in terms of my daughter Miranda's fibodysplasia ossificans progressiva (would like fewer of the "downs", please, for 2015). The first part of 2014, until the late spring, was pretty good. Suzanne and daughter Erin McCloskey live in Washington State, and they came to visit us in January, which was cool. Erin and Miranda both have FOP and are the same age, so we've visited back and forth many times over the years. As it happened, Miranda and ...

Stealth flares

December 28th, 2014

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Well, it's been a lovely Christmas... We ate ourselves silly, listened to/sang many seasonal songs, and watched multiple J.R.R. Tolkien movies (both in theatre and in DVD form). And, it's not over yet! Still a few more days until the New Year, sweet. Now - with the holiday pleasantries out of the way, I'm going to turn to a topic concerning fibrodysplasia ossificans progressiva, the disorder which affects my daughter Miranda. Specifically, this is the subject about how it's possible for FOP to progress without obvious flare-ups. I learned this at first in the fall of 2013, and now have had it confirmed ...

Miranda goes to a Christmas party

December 21st, 2014

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Yesterday I took Miranda to the annual "Special Kids Christmas Party" at the convention centre in downtown Vancouver. We weren't sure what to expect, as had never gone before, but decided to give it a try. The criterion to attend is that a family must have a child (or children) with special needs, and I think foster kids/kids living in poverty were also invited. Anyway, we arrived around 11 AM, right when it started. There was a pretty huge line-up for it, in which we happened to meet up with my friend Lindsay, a fellow rare disease mom. Lindsay had her ...

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 ...
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