A “science-y” summer

Posted by Karen - July 19th, 2015

For my daughter Miranda, this week was all about SCIENCE! Miss M just finished a science-themed day camp this Friday, and today, we went to the Vancouver Aquarium and learned all about penguins, sea otters, and more…

It was a totally action-packed week for Miranda, and very cool, but started with a scare courtesy of fibrodysplasia ossificans progressiva. Yeah, good old FOP… 9 days ago, Miranda started complaining of a very sore upper back. This went on for a couple of days, but I didn’t think much of it because this isn’t too uncommon for her, especially at the end of the day. However, then by about Saturday night, I started noticing some prominent veins on the right side of her back. This put me on alert – flare-up developing? Early Sunday morning, I walked by her bedroom and heard her sort of moaning in her sleep. Oh yeah, here we go, I thought, textbook early flare-up stuff. Then, by Sunday evening, I thought there was some swelling on her right upper back, and it felt warm. That was it, M had a new flare-up… Or did she? Miranda slept well on Sunday night, and when I went to look at her on Monday morning – gone. Nothing there (I mean, no new flare-up, and I couldn’t see what I had noted the night before).

This is all very confusing, but has happened a few times in the past, so not unheard of. The rest of the week went by uneventfully (phew). FOP seems to sometimes start to get ramped up, get everything rolling, and then inexplicably back off. Once, Miranda had a very obvious new flare-up which did all the usual stuff, including swelling up quite big, but then disappeared 4 days later (the typical flare takes 2 to 6 weeks from start to finish). Definitely weird, one of the many weird things about FOP. But, whatever… At the end of the day, BULLET DODGED.

No flare-up, all clear...

No flare-up, all clear…

So now, onto the fun stuff – Miranda and her two pals, whose names also start with M, did a “Science Alive!” summer day camp at Simon Fraser University. From 8:30 AM to 3:30 PM, the girls and their group mates did various science experiments and activities around the theme of explosions. How, you ask, could I send my FOP child off to something like this and feel OK about it? After all, she has an educational assistant to keep her safe and protect her in school, so how could she manage at a day camp? Well, there’s an awesomely excellent thing about the SFU summer camps, which is that the staff positions are so highly coveted by university students as summer jobs that there are a gazillion and one students willing to simply VOLUNTEER their time in hopes they’ll get a paid job the following year, meaning the camps program has enough extra volunteers to assign an extra one to any given group to help a child with a disability. This is so amazing, I still can’t get over it… Because of this situation, Miranda can do summer day camp activities just like any other kid. It is, I must say, fan-freaking-tastic. OK, it’s not 100% safe – nothing involving FOP ever is – and I still had a bit of butterflies about it, but this was definitely not an opportunity to pass up. And as it turned out, everything went very well with the camp, no hitches at all. Miranda had a great time at camp, where she and her friends were the “3 M”s.

Today, however, was the science piece-de-resistance… A trip to the Vancouver Aquarium, where Miranda got to do up-close-and-personal “animal encounters” with both a penguin and a sea otter.  (We paid extra for these “encounters”, which were a reward for a really good report card this year.) First, we learned all about penguins, and got to actually touch the back feathers of a special animal whom they brought in to a small room for us to meet. Miranda really liked this in particular. Later on, when it was the sea otters turn, we got to throw smelly squid and fish parts to one of the otters and learn about how the otters at the Aquarium had been rescued as orphaned pups. Also very cool. We also saw the sea monsters exhibit, where they had skeletons and preserved bodies of various unusual and mysterious sea creatures.

Good summer week, all things considered.

Looking at toads, frogs and birds in the tropical section at the Aquarium.

Looking at toads, frogs and birds in the tropical section at the Aquarium.


– Please help us wrestle the FOP beast under control by donating to our summer FOP fundraiser. On August 2, 2015, we’ll be doing the Walk for FOP in Calgary, Alberta, and we’d like very, VERY much to reach our target goal of $20,000 raised. All funds will go to the Canadian FOP Network, a Canadian charity which provides almost all monies raised directly to FOP research. If you’d like to donate to us on-line, please go to www.walkforfop.com, and click on either “General Donations” or “Donate to Participant” (the latter is to direct your funds in honour of a certain person). Or, if you’d prefer to donate via cheque, contact me and I’ll be happy to tell you where to send your donation.

– If you have FOP, consider taking part in either the FOP Natural History Study or the Phase 2 clinical testing of the potential FOP drug Palovarotene. Both involve some short term travel to one of the study sties (Philadelphia, San Francisco and Paris, France host both studies, while the Natural History Study has a few other worldwide locations as well) – but all travel costs are covered, even if you have special travel needs due to FOP. For more details, see the IFOPA website and watch the scrolling banner: www.ifopa.org.


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