Archive for May, 2015

Independence

May 31st, 2015

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My daughter is now a pre-teen. I guess that starts around age 9, and she's now 10 (and a half). And, like clockwork, over the past year-ish I've been seeing Miranda push for more freedom. This is absolutely age-appropriate, but it's definitely... a challenge in the context of fibrodysplasia ossificans progressiva. With more freedom comes more risk. With FOP, even a minor fall or bump can lead to a flare-up and more bone. It can be a vicious cycle - the child is tired of restrictions, so does more things and take more chances, suffers a trauma, gets a flare-up, flare-up ...

Research, and pushing for more of it

May 24th, 2015

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Every year I really looking forward to reading the annual report of the Fibrodysplasia Ossificans Progressiva Collaborative Research Project. The "Collaborative Research Project" is the official name for a group of scientists headquartered at the University of Pennsylvania who are busting their butts to develop treatments and a cure for FOP.  And, ta-daa, the 24th such annual report was released this week. Yay!! Things have come a long, LONG way from 2007 when I read one of these reports for the first time. At that point, the researchers were still on a high from having announced the FOP gene discovery the ...

Sleepover with the Girl Guides

May 17th, 2015

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I am unbelievably tired right now - but I guess staying up ALL NIGHT will do that for ya, ha ha. Must find some way to make it through the rest of the day until bedtime, so figured I may as well blog like I usually do on Sundays... So why was I up all night, you ask? That would be because my daughter Miranda's Girl Guides group - of which I am also one of the leaders - had a sleepover last night at the H.R. MacMillan Space Centre (aka, the Planetarium) last night. Actually, this was a district sleepover, ...

Mother’s Day for moms of kids with FOP (and other special needs)

May 10th, 2015

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Today is Mother's Day, which explains why I'm a bit later than usual at writing my weekly blog post... See, this morning we all hopped in the car and drove to a fab Vancouver-area restaurant called The Boathouse, which has an amazing and huge Mother's Day brunch. Then, after that, we went for a walk along the seashore at English Bay. Wonderful morning, really. Mother's Day often gets me thinking about this whole motherhood gig, and the ways in which it's coloured by experience with my daughter's fibrodysplasia ossificans progressiva. Now, to be fair, I'd say that in most of the ...

Treatment vs. cure? We’ll take either…

May 3rd, 2015

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As you may know, there is currently neither a cure nor a consistently effective treatment for my daughter Miranda's disease, fibrodysplasia ossificans progressiva. Yeah, there's Prednisone, but it's very seriously "hit and miss" in terms of ability to eliminate a new flare-up - and in our experience it's much more miss than hit... So really, we'd be delighted with ANYTHING that works. I remember when Miranda was first diagnosed with FOP in 2007. Back then, I found it hard to conceive that there was pretty much nothing to be done except pain relief for FOP. How could that possibly be? Sadly, ...