Friends With FOP

Alan and I have had the opportunity to talk to two separate families who are also living with FOP.  Alan talked to Sarah Steele and her mother, Marilyn, over the weekend (a link to an article about Sarah is on the "FOP Web Links" page).  He was so inspired after talking with them.  Sarah is 23 years old and has graduated from the University of Washington.  She lives in Redmond which is just down the street from us.  I think Alan would be a better person to blog about his conversation.  However I can attest that he was enlightened after their ...

We had a pretty good weekend.  To start out, on Friday morning, Erin's swelling had subsided on her back.  However we can now clearly see the new FOP bone that developed.  It looks very similiar to all the photos we've seen of FOP patients.  We'll take a photo of her back an post it here.  The good news is is that she is no longer in any pain.  She stop taking the Aleve and Prednisone for now. I think Erin has gone through another growth spurt.  I am wondering if the growth spurt brought on this last flare-up (a question for the doctors).  ...