• 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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FOP in Philly

March 1st, 2015

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Last week I attended my first "in person" board meeting of the International FOP Association. I had been looking forward to this trip, and it didn't disappoint... It all started on Thursday, February 19, when I boarded a plane to fly to first Toronto, and then Philadelphia. I have to say, I enjoyed that flight! Several hours, all to myself to watch movies and relax. Bliss. Ahem... Anyway, I made it to Philly safely, took a rather meandering shuttle ride to my hotel and checked in, then went to find the rest of the IFOPA group, who were meeting for a ...

Travelling for FOP!

February 15th, 2015

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Short post today just to mention that later this week, I will be travelling to Philadelphia, Pennsylvania for my first ever "in person" board meeting of the International FOP Association. I was elected to the board in January of 2015. Yay! I am very much looking forward to this. OK, some of it (paperwork and budget reviews) is likely to be kind of dull, but on the other hand I will get to learn about how the IFOPA is supporting ongoing fibrodysplasia ossificans progressiva research. Also, I understand that we will be granted a look at UPenn FOP lab, which I ...

Why I can’t fully vaccinate my child

February 8th, 2015

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I have always been a big supporter of vaccination. My husband and I were immunized as children and got our son Owen all of his shots right on time, and when our daughter Miranda came along 3 years later, we did that for her as well. As far as I'm concerned, vaccinating is a no-brainer. And, I've never seen a speck of evidence that vaccination did anything for my children but good. However... Where my daughter is concerned, it turns out we dodged a major bullet. When she was diagnosed in 2007 at age 2 years and 3 months with the ...

Why other special needs parents are my peeps

February 1st, 2015

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Recently I had an interesting conversation with another parent. I was at a kid-related event, and started chatting with a mom whom I knew a little bit, but not very well. She had adopted two children with significant behavioural and cognitive challenges from a bunch of different problems, and within a very short period of time, she was telling my all about her kids' issues, treatment they had had, difficulties they were facing, and so forth. It was an interesting story, and by virtue of my experience with my daughter's fibrodysplasia ossificans progressiva, I was able to relate to many ...

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 ...
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