I lost count on how many times I told someone that I felt like we were living a story on Mystery Diagnosis.  Lo and behold I received an email today from an associate producer from Mystery Diagnosis.  He asked permission to use some of Erin’s pictures for a show they are putting together about FOP.  I was thrilled to give permission and even more thrilled to know FOP will be getting some major air time.

The FOP episode will feature Ashley Kurpiel who lives in Peachtree City, GA.  She was diagnosed at 3 1/2 years old (she’s 27 now).  Back then very little was known of FOP.  So what she endured prior to her diagnosis is pretty extreme.  Her shoulder and right arm was amputated b/c the doctors thought she had a form of cancer.  Dawn, our genetic counselor, said it the best….(paraphrasing) Erin came out fairly unscathed prior to her diagnosis.  It could have been a lot worse. 

The producer gave me Ashley’s contact info but she contacted me first!  We’ve been going back and forth via IM all evening.  She can walk but she’s slow.  So she uses a wheelchair just so she doesn’t slow others down.  Otherwise she is living her life just as the rest of us are.  She’s absolutely amazing….positive outlook on life and a cure. 

I’ll be sure to post when her episode will be aired.