Early summer fun!

June 5th, 2016

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June is finally here. My daughter Miranda's grade 5 school year is only 4 weeks more, and that means... Not much actual schoolwork! It seems every time I turn around Miss M has yet another school field trip or special event coming up. This past week it was swimming at an outdoor community swimming pool, and soon will be a trip to Chinatown, a day at a waterslide park, and Sports Day. Fortunately Miranda is still physically able to do all of these special things (though Sports Day does end up being somewhat limited). However, fibrodysplasia ossificans progressiva does interfere, of ...

It’s that special time of year… IEP time

May 29th, 2016

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My daughter Miranda enjoys school a lot (though at age 11, she won't admit that, ha ha). Fortunately, school is one thing in which someone with fibrodysplasia ossificans progressiva can participate with others on a level playing field. However, that doesn't mean school is without challenges. There are some difficulties to overcome for Miranda to have a positive experience. Hence, the "individualized education plan" (IEP). The IEP is a special agreement between family and school as to what extra steps the school will take to make school work well for a child with special needs. This week, we had the last ...

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 ...
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