Archive for April, 2015

Rare Finds, a fabulous gala

April 26th, 2015

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Last night my husband and I went to the 6th annual "Rare Finds" fundraiser event for the Rare Disease Foundation, a local Vancouver based charity. After a... uh, challenging week at work, this was a PERFECT  way to spend a Saturday night. First, what's the Rare Disease Foundation? The RDF is a charity which was started about 7(ish?) years ago which has two purposes. First, it provides "microgrants" of $3,500 apiece to scientists and care providers wanting to do research which will benefit the care of patients with rare diseases. $3,500 doesn't sound like a lot, but even with this bit ...

8th anniversary of FOP in our world

April 19th, 2015

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Eight years ago today, everything changed for our family. That was the day we found out that my daughter Miranda has fibrodysplasia ossificans progressiva. Our girl was just 2 years old. If I had to identify the single worst day of my life, April 19, 2007 would be it. Words can't even begin to express the surreal, appalling horror of finding out your child's muscles will gradually transform into bone and lock her into a second skeleton. It's an unbelievable experience, almost like something out of a science fiction movie. I remember wandering around in a daze, and thinking, "How can ...

Courage

April 12th, 2015

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A few months ago, I did a blog post about how it's not my thing to refer to my daughter Miranda, age 10, as "my hero", or "courageous ". My point there was that my girl is simply living her life - how could she do otherwise? - and hasn't done anything super special. While she has experienced much pain and discomfort with flare-ups of her fibrodysplasia ossificans progressiva, as well as physical limitations caused by FOP, she has always reacted PRECISELY in the way anyone would react - that is to say sometimes she's born the pain and restrictions ...

The latest on the drug trial (!)

April 5th, 2015

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Hi friends, and happy Easter! On this fine Easter Sunday in Vancouver, the sun is shining and it's looking like a beautiful day. We've got a nice big Easter ham in the oven, and later on we'll have one of those awesome holiday feasts with my mother-in-law. My kids are enjoying their Easter treats, and my husband and I are sipping our fave coffees from a certain Seattle-based, mermaid featuring coffee company... Ah, feeling like a great day. [caption id="attachment_2640" align="aligncenter" width="300"] Chocolate cupcakes with Easter-inspired colours and designs which my kids and I baked yesterday.[/caption] To top it off, earlier this ...