• An experiment in letting go (a little bit)

    July 1st, 2013

    Read More

    2

    Posted by Karen Yesterday we got back from 2 days at Girl Guide Camp.  Yes, I attended with Miranda, the way I did the past 2 years.  There are always a number of mom volunteers, so having one more along for the ride doesn't cause anyone to blink an eyelash.  This year though, we handled it a bit differently than we did in the past... This is Miranda's third year in Girl Guides, and it's necessary for me to attend camp with her.  The girls are supposed to be able to dress themselves and use the bathroom on their own, neither of which Miranda can do ...
  • Stuff leading in to summer…

    June 23rd, 2013

    Read More

    2

    Posted by Karen I must say, I am SERIOUSLY looking forward to July...  Because almost all my kids' activities will be finished.  ;-) Between Miranda and her brother Owen, I was seriously run off my feet this week.  Especially this weekend.  Get Miranda's schedule yesterday - first it was the end-of-season softball wind-up, then the end-of-year Brownies picnic, then a classmate's movie/bowling birthday party.  We didn't get home until 8 PM. Miranda was in typical form yesterday - and by that I mean unbelievably full of energy.  Fibrodysplasia ossificans progressiva?  Ha, what's that and why would it make me tired or affect anything I ...
  • I am so not good at…

    June 16th, 2013

    Read More

    2

    ...Fundraising.  In fact, one might say that I'm pretty pathetic at it.  Big old lameosaurus, that's me. Yes, I suck at it, and yet I can't throw my hands in the air and give up.  I am compelled to fundraise because of how breathtakingly close we are to clinical trials for drugs to treat fibrodysplasia ossificans progressiva (FOP). [caption id="attachment_2085" align="alignnone" width="225"] Our dear Miranda, our reason for FOP fundraising[/caption] I blogged last weekend about the Canadian FOP Network's conference the week before.  At that conference, we heard from the amazing scientists at the University of Pennsylvania about the pace of research for effective ...
  • Canadian FOP conference, 2013!

    June 9th, 2013

    Read More

    6

    Posted by Karen It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore. “It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it.  ;-) So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and ...
  • “LUCKY” to have FOP?

    May 26th, 2013

    Read More

    0

    Posted by Karen OK, of course everything's relative.  Obviously I don't mean that anyone is lucky, period, to have Fibrodysplasia Ossificans Progressiva.  That bit is pretty much the opposite.  What I mean is that in comparison to the situation for many, many other rare diseases, people with FOP are lucky. Here's what I mean...  One of the biggest problems faced by people with most rare disease is that there are no cures, no treatments, and not even any research going on.  If you're a scientist and you could research, say, cancer, which afflicts millions of people, or a rare disorder that has a ...
Previous Next

Research, and pushing for more of it

May 24th, 2015

Read More

0

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

Read More

0

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

Read More

1

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

Read More

1

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, ...

Rare Finds, a fabulous gala

April 26th, 2015

Read More

0

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

Read More

2

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

Read More

0

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

Read More

0

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 ...

Panic

March 29th, 2015

Read More

0

On Friday night I took my daughter Miranda, who is 10 years old, to a movie. We went to the concession, got some treats (some of which Miranda was carrying), and then headed toward our theatre. The cinema is one of those megaplexes with 18 theatres, and ours happened to be at the far end, so we had a bit of a ways to go. So anyway, we were walking along when all of a sudden, Miranda caught her toe on a bit of carpet which was sticking up. She sort of lurched forward, and... *ALMOST* fell, but was able ...

Spring Break in San Diego! And a super big flare-up.

March 22nd, 2015

Read More

2

Farewell San Diego - you were FABULOUS. So, we got back earlier this week from our Spring Break jaunt. It was really, really great, even though it coincided with my daughter Miranda having her biggest, most spectacular flare-up of fibrodysplasia ossificans progressiva in years (oy). We left for California on March 11, and had a smooth and uneventful flight there. At that time, Miranda had a smallish-upper back flare-up which had been rumbling along for a couple of weeks; nothing to be alarmed about, and pain well-controlled by Celebrex. In short, M was in fine form and ready to enjoy this trip. If ...
 Page 1 of 47  1  2  3  4  5 » ...  Last »