• 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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Going to Florida for FOP

February 7th, 2016

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On Thursday this week I'll be getting up really, really early. Crack of dawn type of thing. You see, I have to catch an early plane - to FLORIDA! Yup, it's that time of year again, when board members of the International FOP Association get together for a yearly "in person" meeting. I became a board member in January 2015, which means this is my second year attending. And, by spiffy coincidence, the headquarters of the IFOPA just happen to be in a location where pale, winter-distressed Canadians like to go for a warm, tropical February getaway... Hey, I enjoyed attending the ...

Yes, I AM strong, thanks

January 31st, 2016

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A comment which I sometimes get as the mother of a child with special needs is, "You're so strong!" Sometimes, this is also accompanied by, "I could never be as strong as you." I gotta be honest - I used to roll my eyes at this (well, mentally anyway, as I wouldn't want to be rude). My feeling was that hey, I'm no stronger than the next person, and you could do this gig too if it was your child. I felt like this was a way of the person distancing themself from me; almost a self-assurance thing - "Since I'm ...

The meaning of “rare”.

January 24th, 2016

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I've had this experience more than once... I'll be sitting at my computer and looking at Facebook, and my daughter Miranda will come along and look over my shoulder. She'll ask if such-and-such friend has FOP, or if their child does. Quite frequently, there IS a connection to fibrodysplasia ossificans progressiva. I think this gives Miranda a pretty false sense of how few people in the world actually have FOP. It's not just Miranda, though. I often forget this myself and tend to think of the FOP community as being pretty big. And then, something happens which reminds me of the ...

A birthday, and who she is now

January 17th, 2016

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Haylp, have a big 11 year old girl at my house! Miranda's birthday was this past Friday, and I have to say, I'm very much enjoying this "big-girl" phase. My daughter is really a lot of fun right now. She is one great kid. Every year around Miranda's birthday, I like to do a "focus on Miranda" type of blog post. This is both because I like to brag about my terrific girl (ha ha), but also, to be serious for a moment, because I think it's invaluable for people to realize that there is an actual, true, amazing person connected to ...

Those moments when everything changes

January 10th, 2016

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There are times when dealing with fibrodysplasia ossificans progressiva is nothing short of a nightmare. Imagine you have a child with FOP who's enjoying life, involved in various activities and having fun with friends. As a parent, when all is going well, FOP can sort of fade into the background and you don't think about the havoc it can wreak on your child. But this sense of serenity never lasts too long... Because one day, the child will say that a body part is hurting, or she suddenly can't move that body part like she used to. You check it out, ...

FOP hopes for 2016

January 3rd, 2016

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Happy New Year, friends! Can you believe it's 2016? That seriously blows my mind. There's now a whole new, fresh year ahead. So many things to wonder about... As always for me, this includes a whole set of questions around my daughter Miranda's fibrodysplasia ossificans progressiva. Too bad I can't wave a magic wand and ensure that everything turns out the way I want. With that in mind, here's what I'd like to see happen (or not happen, as the case may be) in 2016: - This one's a real biggie, and it's personal. You see, Miranda will be 11 years old in ...

FOP in our world – 2015 edition

December 26th, 2015

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We're now less than a week from the end of 2015, so it's fair enough to sum up the year in FOP... In fact, I can do it in one word:  MORE. This year, there was just more of everything about fibrodysplasia ossificans progressiva. Some of it was just "more" for my family - my 10 year old daughter has FOP - but a whole lot of it was generally for the FOP community. At the beginning of 2015, I was thrown head first into the world of the International FOP Association - I was elected as a board member, and ...

The flu shot and FOP, round 5

December 13th, 2015

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This is my 5th almost-annual post about the flu shot and fibrodysplasia ossificans progressiva. Having YET AGAIN had a... "challenging"... experience with getting my daughter Miranda her flu vaccination, I've resigned myself that it will be a struggle every year. Why is this so hard? The background issue is that because of her FOP, Miranda can't get an intramuscular injection. An injection into muscle creates trauma to the tissue, and that in turn can lead to an FOP flare-up which causes bone to form at or near the area of the injection (NOTE - to be extra confusing, this doesn't always ...

FOP and, yes, fun

November 29th, 2015

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Life with fibrodysplasia ossificans progressiva can be very, very difficult. But that being said, even something as frustrating and challenging as FOP can offer good things. Take, for example, opportunities for... FUN! In dealing with my daughter Miranda's FOP for the past several years, we've actually had some really good times - experiences we wouldn't have had, but for FOP. During the past week, for example, we did a couple of enjoyable things. I'll start with last Sunday. That's the day when Miranda and I grabbed our passports and our American cash, and took a little trip across the border to do ...

Knowing what to expect with FOP

November 15th, 2015

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In 2007 when my then-2-year-old daughter Miranda was first diagnosed with fibrodysplasia ossificans progressiva, I remember reading about how it would likely progress. I learned that for the 97% of people with Miranda's type of FOP, the following could be said: - About 50% of people have their first flare-up before age 5, and the outside limit for the remaining 50% is around age 20. - Flare-ups first occur on the back and later on the front of the body (dorsal to ventral pattern) and also begin on the trunk, which is the centre of the body, and later move down the ...
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