Friends With FOP

One year ago today Alan and I received the call from the genetic counselor.  Erin's DNA test has come back positive for FOP (Fibrodysplasia Ossificans Progressiva).  I know I had convinced myself that the swelling could be some type of a lymphoma issue.  I still remember the day when Alan said, "I hope this isn't that disease that turns muscle into bone."  I thought that would be much worse than a cancer diagnosis.  By this time last year, as we waited for the test results, we were trying to come to grips with the potential FOP diagnosis.  Approximately 5:30 on ...

When I think of bikes, I think of summer fun, riding around the neighbourhood, warm sun, excercise, friends and good times.  All great stuff for kids.  However...  Riding a bike does have its risks.  Kids do fall off their bikes, and do injure themselves.  So where does that leave a child who has Fibrodysplasia Ossificans Progressiva?  Isn't riding a bike too risky?  Maybe yes, maybe no...  I know some adults with FOP who rode regular, ordinary bikes during their child and teen years.  I know of one adult in particular who, despite having a fused hip since age 12, rode his regular bicycle (and with no ...

I had a funny experience recently that I've pondered a lot.   Our occupational therapist and physiotherapist suggested we apply for special disability benefits for Miranda from the Province of British Columbia.  These aren't income supplementation benefits, but rather benefits "to help families with severely disabled children pay for medical and rehabilitation equipment."  You'll note I italicized the words "severely disabled".  That's the part I had the problem with.  For quite a while, I declined to apply to this program.  I put it off, not wanting to look at those words.  Finally though, prudence got the better of me, and I decided to go ahead with ...

This past weekend we went to the first ever Canadian FOP Conference and Family Meeting.  I had been looking forward to it for a long time, and I'm happy to say it was a GREAT event. :) We flew out to London, Ontario on the afternoon/evening of Thursday, May 28.  The flight was 4 hours, and I was amazed how great the kids were in the plane.  I'd have to say I was more antsy than they were...  Go figure.  Upon arrival, we picked up our rental car and drove to our hotel, which was the Best Western Lamplighter Inn.  After that ...