• 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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Dismay… But also, FOP on TV!

May 23rd, 2016

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I had an interesting experience this week. By way of background - I've thought for a long time that I have good handle on coping with my daughter's fibrodysplasia ossificans progressiva. I mean this in terms of day-to-day emotions about what FOP means and what it does. I've long since stopped comparing my child to "typical" children, so seeing them do things that Miranda can't generally causes only fleeting, momentary wistfulness. Whatcha gonna do? She has FOP and they don't, so move on. It is what it is. This week, though... Holy smokes. I had a bad moment. What happened was that ...

July is coming up, which means…

May 15th, 2016

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Yes, it's here again - fundraising time... I know you were all waiting for this with bated breath (ha ha). For the third year running, our family will be doing the Walk for FOP this summer. The date this year is Sunday July 31, 2016, i.e., the Sunday of the August long weekend in Canada. Once again, we'll be co-hosting this event with Kathleen Degenhardt and her family. Kathleen is a young woman who lives in Saskatchewan, and just like my daughter Miranda, she has fibrodysplasia ossificans progressiva (FOP). Our goal is to raise as much money as we can to ...

The rarest of the rare

May 1st, 2016

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I've talked many times on this blog about how my daughter Miranda's disorder, fibrodysplasia ossificans progressiva, is super-duper rare. Only 1 in 2 million people, meaning that out of roughly 7 billion people worldwide, there are maybe 3,500 with FOP - and only 800 to 900 of those have been diagnosed. Yep, that'a a very, VERY uncommon disorder. Within this group, however, there is an even more rare sub-set... All people with FOP have a mutation located on the second chromosome. The gene is referred to as ACVR1/ALK2, and in people with FOP, the gene builds a protein called ACVR1 - ...

A big week

April 24th, 2016

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A whole lot of stuff happened during the last few days... And all of it connected to fibrodysplasia ossificans progressiva. To begin with, Tuesday, April 19 was the 9 year anniversary of my daughter Miranda's diagnosis with FOP. Fortunately THIS April 19 was an ordinary, boring day - not like that day in 2007 when I woke up, got my daughter ready to go to BC Children's Hospital, and wondered why on earth we had an appointment with medical genetics (isn't that about inherited diseases?) but hoped we'd get a simple answer about why my 2 year old had swellings on ...

FOP groups are springing up like mushrooms (the good kind)

April 10th, 2016

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Welcome FOP Australia! The land of kangaroos and koalas is now a country which has its own organization for fibrodysplasia ossificans progressiva. This new group is having an official launch celebration on June 4 in Brisbane, Australia (small bit of trivia - I lived in Brisbane for a year after finishing high school). FOP Aus has been on-line for a few months now, but I think this is its first in-person event. It joins a number of FOP groups in a number of different countries/world areas, including Italy, Netherlands, Germany, Sweden, Canada, the United Kingdom, France, Russia, and probably elsewhere ...

Shoes – a massive hassle

April 3rd, 2016

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Last weekend, my daughter Miranda, age 11, wanted to go shopping at Value Village (a store which sells used clothing and other items). We don't go there often, maybe once every few months, but Miranda always enjoys it. She likes shopping there because she is often able to find cheap outfits and shoes. In fact, one of her favourite things has always been to scan the shoe section for discarded treasures. Except... Ever since May 2014, shoe shopping has become a whole lot harder. To be accurate, it's actually never been easy. Because of fibrodysplasia ossificans progressiva, Miranda's feet are wide across ...

10 years ago a wonderful thing happened…

March 27th, 2016

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On April 23, 2006, my family and I were enjoying our fun, smart, and generally awesome one year old girl and her older brother. It was still about 3 months before we saw a strange swelling appear on our Miranda's forehead, and about 10 months before we discovered a similar lump on her neck. Also, it was 361 days - almost exactly a year - before our journey with fibrodysplasia ossificans progressiva officially began. [caption id="attachment_2908" align="aligncenter" width="300"] Before everything started...[/caption] For those already in know about FOP, however, April 23, 2006 was a momentous day. On that date, scientists Dr. Eileen ...

How it went, or, “our trip to California”

March 20th, 2016

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In my last blog post, I talked about our plans for a March break vacation. 2 weeks later, we've now taken the trip and returned alive to tell about it... (LOL!). If you read that last post, you may recall that I was waffling about whether we should take the wheelchair for Miranda in case she gets tired of walking. In the end, we didn't take it - not after Miranda vehemently refused to consider using it. Fortunately, that turned out to be an OK decision, and there was only maybe a moment or two when I wished we had it ...

Vacations and FOP

March 6th, 2016

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Spring Break for my kids is just around the corner... And they are VERY much looking forward to it. Of course, a 2 week break from school is always welcome, but this year it promises to be extra fun. Why? Because we're heading to California, baby! By excellent good luck, my sister-in-law got a job working in Santa Cruz, and naturally, we must visit her there. You know, because it would be rude not to. ;-) It would also be a shame not to explore nearby San Francisco while we're there, so we're doing that too. Both Owen (age 14) and ...

Rare Disease Day 2016, and why it should be important to you

February 28th, 2016

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Tomorrow is Rare Disease Day. It's on February 29 this year, which is clever. We'll be talking about rare diseases on a rare day! For Rare Disease Day 2016, I'll be attending an event hosted by the Vancouver based Rare Disease Foundation ("RDF"). This is one of many Rare Disease Day events held in cities all across the globe. At our local event, we'll do a number of things including looking at various disease-specific table displays, attending a presentation about "micro grants" awarded by the RDF to researchers working on rare diseases, and listening to a parent give a speech about ...
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