• 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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Loss

August 17th, 2014

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Posted by Karen I try to keep a mostly positive tone in these blog posts. My aim is to focus on how my family copes, lives and thrive in the face of my daughter's fibrodysplasia ossificans progressiva. Sometimes, though, I need to look at difficult stuff. This is one such occasion. My one word title, "loss", says it in a nutshell. This was a week for coming face to face with this painful topic. Of course, there was the tragic death of the famous actor Robin Williams. This was a terrible shock, no doubt, but there has been much commentary about it in social media and ...

Guilt

August 10th, 2014

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Posted by Karen If you have a kid, chances are you're familiar with parental guilt - there's always something to worry about and whether or not you're handling it right... But if you have a child with Fibrodysplasia Ossificans Progressiva, that guilt thing can go to a whole new level. See, one of the "delightful" features of this genetic disorder is that if person with FOP suffers an injury, even a fairly minor one, the faulty gene can go haywire and cause a swelling which in turn leads to new bone formation and progressive disability. As a mother or father of a child newly diagnosed with ...

Summer vacation, and Walk for FOP 2014

August 3rd, 2014

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Posted by Karen We got back from our 2 week long vacation yesterday evening. Sorry for the absence from blogging, but taking a break from everything was... Heavenly! Before we left for vacation, I was a bit unsure how it would be this year. This is because barely 6 weeks earlier, my daughter Miranda, who is 9 years old and has Fibrodysplasia Ossificans Progressiva, had taken a tumble and suffered a fractured tibia (shin bone). The fracture was just a hairline, and resolved quickly, but unfortunately the trauma caused an FOP flare-up in Miranda's lower calf muscle. As a result, a new ...

Still about the leg

July 13th, 2014

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Posted by Karen Today's blog post is about - wait for it - the left leg. Again... OK, I have blogged about it a lot recently, but honestly, it's the biggest Fibrodysplasia Ossificans Progressiva thing to hit Miranda since the super-giant-multiflares of '07/-08. Nothing has impacted on Miss M's life as much as this new lower calf restriction in a long time. Before this happened, I always envisioned FOP leg flare-ups involving the hip and knee. And, true to my expectation, Miranda's first ever leg flare-up did involve her knee, last fall, when she had a flare which left her with reduced ability to fully ...

Is that a flare-up…?

July 6th, 2014

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Posted by Karen The saga of the leg continues... As of June 25, a week and a half ago, my daughter Miranda was authorized by her doctor to start weight-bearing on her left leg. She had suffered a minor "buckle fracture" (type of hairline crack) in her tibia a month prior, and by that point was allowed to start walking. The good news is that when Miranda started putting weight on the leg, she experienced no pain at the fracture site whatsoever - in fact, no negative symptoms of any kind at that spot. I am satisfied that the fracture is doing as ...

Some important people, and also (oh yeah) the ankle

July 1st, 2014

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Posted by Karen The International FOP Association has recently been posting “bios” of its founding members. I find these fascinating. I can’t imagine what it was like before families living with Fibrodysplasia Ossificans Progressiva were all connected, but that time did exist. And the IFOPA’s founding members remember it all too well… So how did those connections begin to form? Well, once upon a time, there was a young woman named Jeannie Peeper. Jeannie lived in Florida, and she had FOP. Unsurprisingly, since there were probably about 200 and-some-odd people in the USA with FOP at the time – the mid-1980s – Jeannie ...

Life with FOP and a leg fracture

June 22nd, 2014

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Posted by Karen Last night (Saturday) marks exactly 3 weeks since my daughter Miranda tripped and bashed her leg into a chair in our dining room, fracturing her shin bone. As fractures go, it was a minor one - just a hairline crack - but the consequences of the break have been seriously difficult. The first part was of course the worst. For the first 10 days after the accident, Miranda had her leg wrapped from mid-thigh to toes in a soft cast, and she had to keep it sticking out straight in front of her. This made just about everything difficult - ...

Getting a “leg up” on a difficult situation

June 8th, 2014

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Posted by Karen This past week has truly been one of our most challenging since Miranda became symptomatic 7 years ago with Fibrodysplasia Ossificans Progressiva. The drama all started last Saturday night. It had been a beautiful day, and after being out and about doing activities, we capped off the evening with a board game. After we finished, Miranda stood up, turned around and promptly tripped over the base of her chair, which sent her sprawling to the floor. She was HOWLING like a banshee, let me tell you... Needless to say, I immediately got down to help her and find out if she'd hurt herself. Turns ...

Talking to Miranda about FOP

June 1st, 2014

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Posted by Karen Recently I read an article about a 3 year old girl who was diagnosed this past year with Fibrodysplasia Ossificans Progressiva. The article covered many issues, but one jumped out at me in particular... The girl's mother was unsure and worried about how to talk to her daughter about FOP. How on earth do you explain something like that to a kid, especially a preschooler?? How do you get your child to understand that FOP will cause her to grow new bones and have limited movement, and that many of the things kids do will put her at ...

2014 FOP fundraiser, because the future is promising

May 25th, 2014

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Posted by Karen There is no consistently effective treatment for Fibrodysplasia Ossificans Progressiva. Every one of the roughly 3500 people with FOP faces the same prognosis - sporadic, intermittent soft tissue swellings will come and go, and in most of those swellings, tissue will be destroyed and replaced by bone. All this extra bone causes increasingly severe limitations of movement, a restricted ribcage with reduced lung capacity and a shortened life expectancy. My daughter Miranda, a happy, lively and intelligent 9 year old girl, is one of the people living with this condition. Skeleton of Harry Eastlack, a man who had FOP. Sheets, ...
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