Archive for February, 2011
Rare Disease Day 2011
February 27th, 2011
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Posted by Karen
Here goes my 3rd annual Rare Disease Day blog (wow, my 3rd!)...
In past years, I've written about International Rare Disease Day. I've made comments such as the following:
- There are 6,000 to 8,000 rare diseases which have been identified. A "rare disease" is one with a prevalence of less than 1 in about 2,500 people.
- About 1 in 10-12 Canadians (and probably Americans, too) has a rare disease.
- Most rare diseases have no cure. That's the case for my daughter Miranda's disorder, Fibrodysplasia Ossificans Progressiva.
- Research into rare diseases can lead to medical breakthroughs which benefit people with much ...
A bike for Miranda, round 3
February 20th, 2011
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Posted by Karen
Getting a good bike for my daughter Miranda has been an ongoing quest.
For the first year or so after Miranda's diagnosis with Fibrodysplasia Ossificans Progressiva, I clung to the hope that she'd maintain enough arm mobility through childhood to be able to ride a regular bike. And so, in the spring of 2008, we bought her a lovely princess tricycle, just the kind all the other 3 year old girls were riding...
...But even as we were assembling the tricycle, in April of that year, Miranda's right elbow and shoulder were flaring up and starting to fuse. The picture above ...
THUD. “Waaaaahhhh!!!”
February 13th, 2011
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Posted by Karen
The title of this blog is exactly what I heard on Thursday morning this week, just as I was about to go and tell the kids it's time to get jackets on and head to school. Those kinds of sounds are never good... In this instance, I was in the kitchen and the kids were in Owen's bedroom. I quickly rushed up the stairs and was met by Miranda, bawling at the top of the stairs with blood coursing down the left side of her face. This was definitely NOT GOOD.
I hurried my gal into the bathroom to ...
A star is born!
February 6th, 2011
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Posted by Karen
OK, so the title of this blog is a *slight* exaggeration... However, my daughter Miranda DID have a leading role in a video this week. Very exciting. :-) The video was in support of the BC Centre for Ability's "Wee Dance" program.
I'll tell you how this all came about. Early in 2010, before Miranda had started kindergarten, she had the opportunity to be in a dance class for kids with special needs. The class is run by the BC Centre for Ability, a not-for-profit organization in British Columbia which provides services for kids with various kinds of disabilities ...
