Miranda and Erin over the years

Posted by Karen - January 26th, 2014

Posted by Karen.January 15, 2014 was Miranda’s 9th birthday, as I *might* have mentioned in a previous blog post (ha ha).  This year was an extra special birthday, as we got to enjoy it with a visit from our friends Erin and her mom Suzanne, who live across the border in Washington State.

Miranda and Erin 19-01-2014 11-14-23 AM

Look how big these girls are getting!  Teenage-hood (gasp) is starting to peer around the corner, but it’s not quite there yet.  At age 8.5 and 9 years respectively, Miranda’s and Erin’s big thing right now is playing together with their Maplelea and American Girl dolls.  In fact, they pretty much got to business (dang, why didn’t I get a picture?) as soon as they got together.

I can’t begin to say how lucky Miranda and Erin are to be able to know each other.  Think about it – they both have Fibrodysplasia Ossificans Progressiva, a disorder which affects 1 in 2 million people.  FOP expert Dr. Kaplan has been known to say that you’d have to fill 10 football stadiums full of people before you’d find 1 with FOP.  Or for another perspective, Canada has about 30 million people, of which 15 or so have FOP.  Seriously boggles the brain…  Further, say you even have a few million people in an area (eg, our province of British Columbia together with the state of Washington) – yeah, you might have a couple of people with FOP, maybe even a small handful, which is in fact the case, but what are the odds that 2 of those people would happen to be little girls only a half year apart in age??  I don’t know what those odds are, but they’ve got to be pretty high.  Not only that, but Miranda and Erin have even shared a similar progression of FOP; they became symptomatic within less than a year of each other and each has spine, elbow, shoulder and knee limitations – they could have been years apart in this regard, one becoming symptomatic early with the other not for many years.

Anyway, as these girls live just under 3 hours away from each other.  Seriously, how lucky is that?  This is close enough to get together on weekends from time to time, which we have done.  As these girls grow older, they’ll have the benefit of being able to see each other often and to know that each of them isn’t alone with FOP.  This is priceless.  In their daily lives, these girls have to deal every day with people begin unfamiliar with FOP – not having heard of it, not knowing what challenges they face (both big and small), not understanding what it’s all about.  When Miranda and Erin meet, each “gets” the other in a really profound way.

Don’t get me wrong; it’s not that the girls spend so much time talking about FOP – they really don’t.  But it does come up, and probably will more and more as they get older and are better able to articulate their thoughts and concerns.  Even now at this age, I’ve seen them compare range of movement and little things they can and can’t do as a result of FOP.  I think more to the point, though, Miranda and Erin get the invaluable experience of simply being together with someone else who is LIKE THEMSELVES – someone who is on the same journey.  This is a very rare thing with FOP, which almost always requires internet connection to get to know others experiencing it.

I remember back in early 2008, when our family was less than a year into our knowledge of FOP, and I found out that a little girl so close to us had recently been diagnosed.  My first feeling was profound sorrow for the girl’s family, but then after that, I wondered…  Might our geographic closeness be a very lucky break?  And indeed it was.  We got together for the first time a few months after Erin’s diagnosis, and the girls hit it off right away.  They played together and got along well from the start; I don’t remember any shyness (also, how lucky was it that Suzanne and I got along really well too)?

First picture of Miranda and Erin together - November of 2008
First picture of Miranda and Erin together – November of 2008

Since 2008 we’ve met up with each other once or twice per year on a regular basis.  And it’s been great.

Erin McCloskey and my daughter, Miranda Friz...  Two very special little girls who will benefit from the hard work by FOP scientists.

This is one of my favourite pictures, from October of 2009 when we got together at Erin’s family’s home for a fundraiser.  The girls systematically hauled shopping carts full of stuffy toys out of the house and into the driveway, giggling all the while.

Here are Erin and Miranda sitting side by side at Denny's.

Later that year our two families met for lunch in a town half way between each of our homes.

My daughter Miranda Friz and her friend Erin McCloskey...  Two little girls with FOP who will benefit profoundly from the work done by FOP researchers.

This one was taken in November of 2010, when our two families got together to meet a third family visiting from overseas with a newly diagnosed daughter the same age as Miranda and Erin (third girl’s elbow is just poking in the left edge of the picture, but I didn’t include her here as didn’t ask permission from her family to do so).

I love this photo - shows the girls' terrific "do"s, plus Miranda's doll (on M's seat) and Erin's doll in her dolly wheelchair.

Here they are in November of 2012 (wow, lots of Novembers here, not sure why exactly), each girl with newly braided hair from a fundraising event for a Washington state fundraiser for a teen with FOP.  I love this one; Erin’s got her American Girl doll (yep, it started back then) sitting in a wheelchair on the table and the girls are deeply engaged in an imaginary doll scenario.

Miranda and her friend Erin, two 8 year olds who could benefit so much from a drug for FOP.

…And, not so long ago, Miranda and Erin all dressed up at the 2013 25th anniversary celebration for the IFOPA.

Friends, girls who share an impossibly rare bond.

2 Responses to “Miranda and Erin over the years”

  1. Suzanne Hollywood says:

    Beautifully written about two beautiful little girls :)

  2. Patty Pinkham says:

    Thanks so much for your your posts, for sharing. I feel that I know the girls so well! I met them both at the Celebration, they are beautiful. Emma had a couple of close friends at that age who loved the dolls, etc. I remember the chatter and giggles, the happiness. No FOP friends close by though. Enjoy!

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