FOP on “Mystery Diagnosis” – ALL NEW!!

Posted by Suzanne - January 11th, 2011

Posted by Suzanne

Get those DVRs ready!!  “Mystery Diagnosis” is airing a brand new FOP episode tomorrow, Wednesday, January 12th on OWN (The Oprah Winfrey Network).  Matt Horick and his family will share their journey to Matt’s FOP diagnosis.  Ashley Kurpiel’s episode originally aired in March 2009 and had the highest episode rating “Mystery Diagnosis” has ever had.  Just with Ashley’s episode, the producers of Matt’s story contacted us to use Erin’s photos again.  They still had all of Erin’s CT scans, MRI scans, x-rays, and photos that we accumulated up until her diagnosis.

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Just writing about tomorrow’s episode I get the anxious twitters in my stomach reminding me of all the emotions that came with the uncertainty of what Erin was going through.  I still remember the phone call with the geneticist.  She said she thought they knew what Erin had, but made me promise not to Google the name – “Fibrodysplasia Ossificans Progressiva.”  Of course I Googled it!  However, I recognized the name only because I saw a show about ten year old Luciana in the UK.

It was December 2005, Erin was four months at the time, and I saw Luciana’s toes in documentary “The Girl Whose Muscles are Turning into Bone.”  She had the same malformation on both great toes!  I jumped online and read about FOP.  I dismissed FOP with Erin because she wasn’t showing any other symptoms (or so I thought).

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Back to June 2008, I am on the phone with the geneticist she says “Fibrodysplasia Ossificans Progressiva” and I get excited because I recognized the term “FOP” (and she didn’t say the word “C-A-N-C-E-R”).  Little did I comprehend at that moment in time the magnitude of what a FOP diagnosis brought.  No radiation, no chemotherapy, no surgeries, no gene therapy, no stem cell transplants, no…no…no.  There were lots of “no’s”  and not enough “let’s try this.”

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Each FOP family has their own story to tell.  Tomorrow night it is Matt’s turn.  I do hope you tune in to watch.

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