• An experiment in letting go (a little bit)

    July 1st, 2013

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    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

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    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

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    ...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

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    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

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    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 ...
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Ack, our doctor’s retiring! Or, why TOP physicians are vital for rare diseases…

October 14th, 2018

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Twice recently my daughter has had a physician retire on her. The NERVE, how dare they! Don't they know we need them?? All joking aside, heaving a really good doctor is so very, very important for people with rare diseases. We know from experience, since my 13-year old daughter has fibrodysplasia ossificans progressiva (FOP), a disorder which affects about 1,000 people known to medical science. [caption id="attachment_3241" align="aligncenter" width="600"] My Miranda, age 13[/caption] We have been extremely fortunate to have 2 local treating physicians, our family doctor and our pediatrician, who were really just the best. In the case of rare diseases, ...

A fork in the road… (or actually in the lunch bag)

September 22nd, 2018

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I am eternally on the lookout for forks. Not just any kind, but specifically extra-long ones. We need super long forks at our house because of my daughter Miranda's fibrodysplasia ossificans progressiva (FOP). When Miranda was between 2 and 3 years old, FOP caused her to lose almost all movement in her shoulders, as well as most movement in her elbow. In the context of FOP, she was lucky that her arms fused with the elbows in a bent position, such that her hands meet in the middle around her abdomen - this was fortunate because it meant she could still ...

Back to school… Almost

August 25th, 2018

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Where we live, school always begins the Tuesday after Labour Day. This means there is still ONE... MORE... RUDDY... STINKING WEEK until Miranda and her brother Owen are finally out of my hair. I am a work-from-home parent, so having two teenagers underfoot all summer has been from H-E-double-hockeysticks. Ha ha, OK, I am obviously exaggerating! It's actually been a pretty good summer, but it's definitely getting old. Let's see... Things started out for Miranda with her doing a "grade 7/8 transition" program through the month of July. High school begins in grade 8 around here, which means that this fall, Miranda ...

Alberta Walk for FOP 2018 – what happened and how it went

August 11th, 2018

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Last weekend was our annual Alberta Walk for FOP. I can't believe it, but this was our 7th one, and the 5th that my family has held jointly with the Degenhardt family of Saskatchewan. Holy smokes! Our event is held in honour of my daughter Miranda Friz, age 13, and Kathleen Degenhardt, a young adult. Both Miranda and Kathleen have FOP, and our families began jointly hosting this event when we realized we both have connections in the Calgary area. [caption id="attachment_3220" align="aligncenter" width="800"] Kathleen and Miranda[/caption] Sunday was a terrific day. We had been a bit worried because rain was in the ...

Graduation!

July 8th, 2018

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A couple of weeks ago, my daughter Miranda had her grade 7 school-leaving ceremony. My girl is - gasp - on her way to high school! (Where we live there are 2 levels of school, with elementary being K to grade 7 and high school grade 8 to 12.) Holy smokes, where did the time go, how did she get so big, and blah blah blah... Really though, wow. The school did a morning assembly in which the grade 7 students were recognized. Miranda's star moment was when she and two other students (representing the three grade 7 classes) each gave ...

Walk for FOP, 2018 edition!

June 24th, 2018

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Hello friends! I'm excited to announce to you - wait for it - the Alberta Walk for FOP 2018! As in previous years, the Munro/Friz and Degenhardt families are joining together to raise funds benefitting the Canadian FOP Network (www.cfopn.org). The Canadian FOP Network is a charity which raises funds in support of research into fibrodysplasia ossificans progressiva, as well as provides support for families living with FOP in Canada. Our Walk takes place on the August long weekend, specifically Sunday, August 5, at Baker Park in Calgary (time TBA, but it's always in the afternoon). We warmly welcome you to come ...

An adventure with the power chair

June 10th, 2018

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For some time now, my daughter Miranda has been hungering for more independence. She is 13, and at this age, her friends have all started going places and doing things without parents in tow. However, due to the frustrating limits caused by fibrodysplasia ossificans progressiva (FOP), this has been more difficult for Miranda... With fused shoulders, elbows, and her entire left leg, her walking endurance is minimal and she has had to use a manual wheelchair for anything other than traveling a short distance. The manual chair is limiting and doesn't give much freedom, though is better than nothing. However, ...

Jaws

May 20th, 2018

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Dun da... Dun da... Dun da... Dun da... Dun da dun da DUN DA DUN DA DUN DA - JAWS! Flare-up, that is. SHRIEK!! When my daughter Miranda was first diagnosed at age 2 with fibrodysplasia ossificans progressiva, that's how I felt about the idea of a jaw flare-up. The idea was terrifying. Imagine your jaws permanently locked in place... *SHIVER*. At the time, I took comfort in the fact that "most" people with FOP don't get jaw flare-ups until their late teens, twenties, or even thirties. I figured we had many years ahead of us, and maybe by the time ...

A new set of wheels

May 5th, 2018

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Nope, not the wheelchair van - it's the wheelchair itself, baby! FINALLY, at long last... It's been a really involved and complex process to get all the funding lined up for my daughter Miranda's super duper expensive, high tech power wheelchair, not to mention getting the chair ordered, delivered, adjusted, customized, and programmed. That odyssey, however, is now finished, and the power chair was delivered to our house this week. The first chance Miranda had to take the chair out and put it seriously through its paces was Friday night. [Explanatory point - Miranda can still walk short distances like around our house and ...

The saga of the vehicle

April 7th, 2018

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We're in the process of getting our first ever wheelchair-accessible vehicle. As with so much else concerning our daughter's fibrodysplasia ossificans progressiva (FOP), it's been a long drawn out process... It all started last summer when Miranda, then age 12, had a major FOP flare in her left leg. Prior to that point, we had known that a wheelchair-accessible vehicle was in our future, but it was kind of hazy, far off in the distance. And then, when Miranda's left hip and knee became entirely fused in 2017, it suddenly became much, MUCH harder to get our daughter in and out ...
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