Friends With FOP

In the early days of Miranda’s diagnosis with FOP, Pete and I tried to do everything we could to learn about it and get to know (via the Internet) people in the FOP community.  We NEEDED to do that…  It was the only way we could try to adapt.  We just had to learn how other families dealt with FOP on a daily basis, and how they didn’t just survive, but live.  Everyone we communicated with was so tremendously kind and helpful, and we will be eternally grateful to them for easing us into our new life.

However…  I’ve learned that not everyone adapts to FOP in this way.  For some families, the only way they can cope is to go into isolation from the FOP community, and have as little contact with the community as possible.  I can’t personally understand how this could help, but I’ve learned that there are a number of families out there who’ve chosen to cope in this way, so for some people, this approach must obviously meet the need.  As I said, I can’t understand it, but I have to respect it.  Whatever gets you through the day, as the saying goes.

When Miranda first got her diagnosis, we were very interested to learn that there is at least one other child in greater Vancouver who has FOP.  We were told of this child by Miranda’s physiotherapist and her doctors.  Apparently he was age 11 when Miranda was newly diagnosed.  Since Miranda’s doctors also treated this boy, we asked if they could contact his family and arrange for us to talk to them, maybe meet them.  According to the doctors, though, the family didn’t return their calls when they left messages on the subject.  One of the doctors commented that this family prefers to handle FOP on their own.  We were disappointed, but obviously had to accept it.

In the 1.75 years since Miranda was diagnosed, we’ve had close contact with the FOP community through FOP Online, a Yahoo Internet group.  I am ETERNALLY grateful to that group…  But during that entire time, I’ve seen no sign of this local boy or his family, despite the fact that I post messages often and always identify our family as living in Burnaby, BC (which is part of greater Vancouver).  This further confirms my impression that this boy’s family wants or needs to handle FOP on their own.

A few days ago I had to take Miranda to Children’s Hospital for an x-ray.  The x-ray is preliminary to an experimental course of treatment proposed by one of Miranda’s doctors (I will speak more on this when it gets started).  As we were getting ready to leave the Radiology department, I happened to see a teenage boy who looked about 13 or 14.  He had a very rigid looking neck and back.  His mother was helping him tie up one of those hospital smocks you wear when getting an x-ray.  Seeing this boy’s difficulty moving, I immediately thought of…  Well, you know. 

Was this him?  The other child with FOP?  He looked the right age.  For a couple of seconds, I seriously contemplated approaching this mother and boy and asking point blank if he has FOP.  However, just as quickly as I formed the idea, I decided against it.  If this family doesn’t want contact with others with FOP, then I definitely shouldn’t shove it in their faces.

Maybe some time in the future, we’ll meet this family.  If it happens, though, it should definitely be on their terms.  It’s not fair to push people into situations they don’t want, and which may not help them.  Anyway, whereever this boy and his family may be, and whether or not it was them at the hospital, I wish them the very best.

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