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 [...]

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.Â
So where does that leave a child who has Fibrodysplasia Ossificans Progressiva?  Isn’t [...]

I had a funny experience recently that I’ve pondered a lot. Â
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 [...]

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, [...]