Posted by Karen - December 16th, 2012

Posted by Karen

Like everyone else, I was stunned and horrified to hear about the senseless mass shooting in Connecticut this week.  I can only begin to imagine the sheer devastation of the families involved.  My reaction was to want to immediately grab my kids, hold them and never let go.

The idea of something like that massacre is beyond horror, beyond words…  And it’s been all over the media, as I’m sure you know.  I’ve learned a fair bit about that tragic event.  I think it’s important to honour and remember all the children and adults who fell that day.  But that said, I also agree with parenting guru Barbara Coloroso, who I heard on the radio yesterday.  She was talking about how to discuss this kind of terrible event with your children (ie, children who are not directly involved in the situation and are grappling with it from a distance, as in the case with my kids).  I can’t recall her exact words, but she was talking about “tragic optimism” – the ability to know and understand that even despite a terrible tragedy, people can and will carry on, get through it, continue with their lives and thrive.

And so, in that spirit, I turn back now to the purpose of my blog at Friends With FOP – which, of course, is to raise awareness of Fibrodysplasia Ossificans Progressiva, the genetic disorder which affects my daughter Miranda.  That’s how I can help my daughter, and other kids like her, carry on and have the futures they deserve, unlike those poor kids in Connecticut.  A few things happened this week in the world of FOP, and it’s my mission to tell you about them.

First – the Otto family, whose daughter Sienna is 2 years old and has FOP, came up with a novel and terrific way to raise awareness of FOP and funds for FOP research.  Specifically, they’ve started up a website called “Sienna’s Flower Garden”.  In Sienna’s Flower Garden, you can learn about FOP, you can watch a video about cute little Sienna and you can also donate to the International FOP Association charity in order to plant a “virtual flower”.  To see it, go to www.siennasflowergarden.com.  Every flower planted is posted on the site, and for different sizes of donations, you get a different size flower.  You can donate as little as $5.00 and get a flower.  I love it!  I planted a flower, and I’ve been watching the garden grow…  It’s fascinating seeing the garden spread.  The Otto family – and I too! – would dearly love to see Sienna’s Flower Garden go viral.  Please plant a flower, and spread the word about this webpage.

Across the water in the UK, Oliver Bedford-Gay’s family has also been making efforts concerning FOP.  Somehow they managed to get actor Stephen Fry to do the narration on a short cartoon video about Oliver and FOP.  VERY cool.  To check out this video, go to their site at www.friendsofoliver.com.  Of note, Oliver’s group has now become a registered charity in England, which is fantastic.  The Bedford-Gay family is raising funds for an FOP research facility at the historical and distinguished Oxford University.  It’s great that there are 2 dedicated FOP labs in the world, but distressingly, the Oxford lab is in danger of closing if they can’t raise more research funding.  As such, the UK group “FOP Action” is pulling out all the stops to do fundraisers of all shapes and sizes – including a tastefully done nude calendar featuring, among other people, FOP’er Rach Winnard (details on the Friends of Oliver site).  If you are reading this from the UK, please consider donating to the Friends of Oliver charity.

And finally, I did a modest bit myself this week.  The IFOPA was invited to be one of 20 rare disease organizations featured by the USA-based National Institutes of Health’s Rare Diseases Registry, which seeks to put together registries of patients with rare diseases.  These registries will potentially help scientists contact patients with these diseases in hopes of furthering research.  Anyway, each participant rare disease group has been invited to submit a piece focusing on a patient in its community, and the IFOPA honoured me with the invitation to write about Miranda.  You can see what I wrote on the “News and Events” tab under “My Story” at http://www.grdr.info/ (some other stories are featured there as well, but it’s pretty obvious which one is mine as it’s the only one about FOP).

In the further spirit of optimism, I now have for you a photo of my 2 gorgeous kids, Miranda and Owen, in front of our Christmas tree which we just put up the other day.

Miranda age 7 and Owen age 10, Christmas 2012.

One Response to “Optimism”

  1. Blair says:

    Thanks for this insightful and interesting post

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