• 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

25th Annual FOP Research Report!

June 19th, 2016

Read More

0

Happy Father's Day, everyone. We're definitely enjoying it at my house... My kids, Miranda (age 11) and Owen (age 14) gave their dad a gift in honour of this day, and I made pancakes and bacon for breakfast. After a phone call to my dad, we went out with my kids' grandmother to the yearly Scandinavian Midsummer Festival. Later on today, we'll be watching a hotly anticipated episode of our favourite cable TV show (the one that rhymes with "Fame of Scones", ha ha). It's all good. [caption id="attachment_2970" align="alignleft" width="800"] My kids and their dad, Pete.[/caption] To top it all off, ...

Figuring out how to do stuff

June 12th, 2016

Read More

0

One of the ever-so-fun challenges of fibrodysplasia ossificans progressiva is coming up with alternative ways to do everyday activities. As FOP progresses, joints become partially or completely fused, and making it impossible to do things in a typical way. My daughter Miranda's current level of FOP restriction poses some significant challenges. So, what are her restrictions? Well, the major problem is with upper body movement. Miranda has no movement in her left shoulder (yes, this joint is 100% fused... sigh), very limited movement in her right shoulder and right elbow, and partial movement in her left elbow. Oh yes, and she ...

Early summer fun!

June 5th, 2016

Read More

1

June is finally here. My daughter Miranda's grade 5 school year is only 4 weeks more, and that means... Not much actual schoolwork! It seems every time I turn around Miss M has yet another school field trip or special event coming up. This past week it was swimming at an outdoor community swimming pool, and soon will be a trip to Chinatown, a day at a waterslide park, and Sports Day. Fortunately Miranda is still physically able to do all of these special things (though Sports Day does end up being somewhat limited). However, fibrodysplasia ossificans progressiva does interfere, of ...

It’s that special time of year… IEP time

May 29th, 2016

Read More

0

My daughter Miranda enjoys school a lot (though at age 11, she won't admit that, ha ha). Fortunately, school is one thing in which someone with fibrodysplasia ossificans progressiva can participate with others on a level playing field. However, that doesn't mean school is without challenges. There are some difficulties to overcome for Miranda to have a positive experience. Hence, the "individualized education plan" (IEP). The IEP is a special agreement between family and school as to what extra steps the school will take to make school work well for a child with special needs. This week, we had the last ...

Dismay… But also, FOP on TV!

May 23rd, 2016

Read More

1

I had an interesting experience this week. By way of background - I've thought for a long time that I have good handle on coping with my daughter's fibrodysplasia ossificans progressiva. I mean this in terms of day-to-day emotions about what FOP means and what it does. I've long since stopped comparing my child to "typical" children, so seeing them do things that Miranda can't generally causes only fleeting, momentary wistfulness. Whatcha gonna do? She has FOP and they don't, so move on. It is what it is. This week, though... Holy smokes. I had a bad moment. What happened was that ...

July is coming up, which means…

May 15th, 2016

Read More

2

Yes, it's here again - fundraising time... I know you were all waiting for this with bated breath (ha ha). For the third year running, our family will be doing the Walk for FOP this summer. The date this year is Sunday July 31, 2016, i.e., the Sunday of the August long weekend in Canada. Once again, we'll be co-hosting this event with Kathleen Degenhardt and her family. Kathleen is a young woman who lives in Saskatchewan, and just like my daughter Miranda, she has fibrodysplasia ossificans progressiva (FOP). Our goal is to raise as much money as we can to ...

The rarest of the rare

May 1st, 2016

Read More

0

I've talked many times on this blog about how my daughter Miranda's disorder, fibrodysplasia ossificans progressiva, is super-duper rare. Only 1 in 2 million people, meaning that out of roughly 7 billion people worldwide, there are maybe 3,500 with FOP - and only 800 to 900 of those have been diagnosed. Yep, that'a a very, VERY uncommon disorder. Within this group, however, there is an even more rare sub-set... All people with FOP have a mutation located on the second chromosome. The gene is referred to as ACVR1/ALK2, and in people with FOP, the gene builds a protein called ACVR1 - ...

A big week

April 24th, 2016

Read More

0

A whole lot of stuff happened during the last few days... And all of it connected to fibrodysplasia ossificans progressiva. To begin with, Tuesday, April 19 was the 9 year anniversary of my daughter Miranda's diagnosis with FOP. Fortunately THIS April 19 was an ordinary, boring day - not like that day in 2007 when I woke up, got my daughter ready to go to BC Children's Hospital, and wondered why on earth we had an appointment with medical genetics (isn't that about inherited diseases?) but hoped we'd get a simple answer about why my 2 year old had swellings on ...

FOP groups are springing up like mushrooms (the good kind)

April 10th, 2016

Read More

0

Welcome FOP Australia! The land of kangaroos and koalas is now a country which has its own organization for fibrodysplasia ossificans progressiva. This new group is having an official launch celebration on June 4 in Brisbane, Australia (small bit of trivia - I lived in Brisbane for a year after finishing high school). FOP Aus has been on-line for a few months now, but I think this is its first in-person event. It joins a number of FOP groups in a number of different countries/world areas, including Italy, Netherlands, Germany, Sweden, Canada, the United Kingdom, France, Russia, and probably elsewhere ...

Shoes – a massive hassle

April 3rd, 2016

Read More

2

Last weekend, my daughter Miranda, age 11, wanted to go shopping at Value Village (a store which sells used clothing and other items). We don't go there often, maybe once every few months, but Miranda always enjoys it. She likes shopping there because she is often able to find cheap outfits and shoes. In fact, one of her favourite things has always been to scan the shoe section for discarded treasures. Except... Ever since May 2014, shoe shopping has become a whole lot harder. To be accurate, it's actually never been easy. Because of fibrodysplasia ossificans progressiva, Miranda's feet are wide across ...
 Page 1 of 51  1  2  3  4  5 » ...  Last »