The difference in 4 1/2 years….

Posted by Suzanne - March 14th, 2013

posted by Suzanne

Our next installment of “Dinner for FOP” is this weekend.  For this month’s dinner, most of the participants are not Facebook users.  Their story would be more pertinent told after the dinner and not before.  Still, I needed to publish something on the Facebook page when I thought of doing a side-by-side comparison of Erin’s back.

I met most of our guests at a child care training session.  I have seen them at prior trainings but this particular one I attended after I learned of Fibrodysplasia Ossificans Progressiva.  I was officially introduced to one of ladies towards the end of the training day.  That single introduction started an amazing friendship.

This particular training session was held on a Saturday.  The previous Tuesday was the day FOP was officially introduced to our family.  That was such a horrible time for us.  Although the diagnosis was not definite, we had met with the geneticist and had Erin’s blood drawn for genetic testing.  The test took almost a month to get back the results.  That week was the beginning of what felt like an endless grieving cycle.  Fresh off the initial (not official) diagnosis, I had to go to this training. I probably would have blown it off had I not paid for it, but at the same time I was trying very hard to put one foot in front of the other just to keep moving.

How I managed to get through that training, I don’t know.  I do know a few things…

1.  I met who is now a dear friend…who has a heart of gold… and who absolutely loves children (and her job)!

2.  I left my favorite jacket in one of the classrooms.  No, I did not go back for it.  I was spent and if all I lost was a jacket, then I was okay.

Here is the side-by-side comparison.  This is what 4 1/2 years of progression looks like for Erin (every FOP case is different).  There is nothing we can do to stop the progression but we can raise money for a cure.

Dinner for FOP


2 Responses to “The difference in 4 1/2 years….”

  1. Similar progression with my son, Chris. Thanks for the article.

  2. Amanda Somers says:

    Hi – My name is Amanda, I live in the UK. I have had FOP for 28 years. I am 49 years old now. The circumstances that surrounds my fop is complicated but I do seem to have some resistance to the condition. I don’t always stay locked up.
    Every day I try to work out how to beat this condition. But am getting older and it is becoming more difficult to fight the condition and over the pass 10 years it has been very challenging and at present I need nursing care but I am still confident I can turn it around. Things that have helped me is swimming (water is brilliant as it takes the gravity away and you feel more in control), keeping the body moving with light exercise and rest when you are tired. Hope is my biggest weapon, never giving up. These are only suggestions on how it helps me to cope but I hope it help you too – love and light x

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