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 ...

A whirlwind trip for FOP

February 21st, 2016

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Last weekend, I read one and a half 300+ page books. You can do that when you have to be on a plane for 14 hours round trip! ;-) I travelled a long, long way last weekend to attend the annual "in person" board meeting of the International FOP Association. See, I live in Vancouver, on the west coast of Canada, and this meeting was in - wait for it - Florida, on the southeast tip of the United States (Orlando, to be exact). This involved 2 days of travel for an entire trip which was only 4 days long, but ...

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 ...
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