A visit with our friend Erin

Posted by Karen - August 27th, 2017

Our Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) at age 2. At the time, we knew of no other children with FOP within a 12 hour driving radius. We had on-line connections with FOP families, but still, that was a lonely time. And then, along came Erin…

Erin was born the same year as Miranda, a few months later, and was diagnosed with FOP not-quite-a-year after Miranda. And, of all amazing things, Erin and her family live in the Seattle, Washington area, just 3 hours’ drive from our home! Needless to say, our two families jumped at the opportunity for a face-to-face meeting, and we arranged one that spring. When we finally met, I couldn’t take my eyes off Erin… Her movements were so like Miranda’s, and their degree of affectedness was quite similar. And fortunately, our two girls – and for that matter, our two families – really clicked. The girls got along like a house on fire, our older boys enjoyed playing video games, and us parents found that we shared similar values, viewpoints, and lifestyles. What tremendous luck, if you MUST have to deal with FOP…

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The girls at their first meeting.

Over the years, we’ve had multiple get-togethers between our two families, though most often it was Miranda and I hanging with Erin and her mom, Suzanne. We’ve had some wonderful times.

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.

A few years later

Miranda and Erin with Erin's sweet new ride.

Miranda and Erin with Erin’s sweet new ride.

Now, as it happens, the last time we were able to get together before the present was, I think, late autumn in 2015… We met for a shopping expedition at a “half-way” point, in Bellingham, Washington.

My super-duper rare girl and her equally rare friend in November 2015

My super-duper rare girl and her equally rare friend in November 2015

2016, unfortunately, turned out to be a rough year for Erin. Through that year, she struggled with nutrition problems – no matter how much she ate, she just couldn’t seem to gain weight, and she had frequent nausea (these are problems which affect a minority of FOP patients). She had to have a bunch of medical investigations into what was going on. On top of all that, she developed a painful FOP flare-up in one of her legs. Understandably, the time was never right for a meeting that year.

But, if we thought 2016 was difficult for Erin, 2017 absolutely doubled-down on her FOP issues… She had finally started to get back into a regular routine, when a virus attacked Erin’s lungs with a vengeance. She was hospitalized in April, and remains there today. Her hospital experience has included emergency intubation, a ground-breaking and unique tracheostomy installation, and an occasion when she stopped breathing. Her family expects her to be in hospital for at least several weeks more. It’s been some terrifying and extremely difficult times for Erin and her family.

Miranda and I have been wanting to go visit Erin in the hospital for a while now. For quite a bit though, Erin’s health was volatile, and also Miranda has been dealing with a persistent and painful left leg flare-up which has been plaguing her since January and which has made driving longer than 10 minutes extremely uncomfortable.

However… Yesterday everything FINALLY fell into place for a visit. Miranda’s leg flare is ongoing, but is no longer interfering with long drives, and Erin is stable. And so, Miranda and I did the drive down to Seattle Children’s Hospital.

 

Now as it happens, Erin can’t talk (yet) with her new tracheostomy, so her ability to communicate is limited. And, Miranda needed to sit in her manual wheelchair, and we had to situate her in a part of Erin’s room which wasn’t optimal for the girls to interact. But nevertheless, it was so good to see our sweet friend. Miranda gave her a piece of art which she had made in her summer art day camp, as well as a stuffy toy gift.

The girls, August 2017.

The girls, August 2017.

I’m not going to lie; it was emotionally hard to see Erin hooked up to so many machines, and so immobilized. Erin seemed like her mood was somewhat down, but that is COMPLETELY understandable. It’s amazing to me that she’s doing as well, emotionally, as she is. That girl is one heck of a fighter.

Sadly, we couldn’t stay a long time. It did take us 3 hours (plus 20 minute border wait) to drive to Seattle, and then we faced the return trip that day as well… This was too bad, because I wished the girls could have had more time to relax and interact. I also would have liked to talk more with Suzanne. But, we took what we could get, and I hope Erin enjoyed our visit, at least a bit.

Hoping with all our hearts that Erin’s recovery continues smoothly from this point. Hang in there, friend.

2 Responses to “A visit with our friend Erin”

  1. ❤️ Feels good to see them together again. And the old pictuers bring back nice memmories.
    Love – M.

  2. Jeri Licht says:

    Sometimes the cruelty of all this is beyond me. I know it was primarily the luck of a combination of things that kept Daniel heathy during that time of his life, and it terrifies me. I want to scream when I see this sweet smart girl with the funny smile in the photos from a year ago beaten to a pulp by a germ. She had already won when she persevered through bouts of FOP, it is not ok for her to have to deal with this, too. I don’t get it.
    I am sure Erin was thrilled to see Miranda and it will matter more as they both grow up. Jeri



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