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 we got some pizza for supper, then to bed.

Our first stop on Friday was the hotel pool.  Which, I must say, was fantastic…

In the photo, the rock wall behind the pool had a nifty waterfall created by overflow waves from the waterslide above. 

In the pool, we met our second-ever person with FOP (ie, second after Erin McCloskey): Yorick Blonk from the Netherlands.  Yorick is 5 years old, and I’ve been having e-mail conversations with his mom, Saskia, since summer of 2007.  I recognized the tell-tale signs of a child with Fibrodysplasia Ossificans Progressiva right away - he had the typical very straight, unbending back, and neck that moves only a little, just like in our Miranda.  Anyway, I was just delighted to meet Yorick and his family, which included his dad Erling, sister Rihanna (age 10) and aunt Ingrid. 

We had a terrific time swimming, and then back to our hotel rooms.  We weren’t in our rooms for more than 2 minutes, however, when I heard a rapid knock on the door.  It was Saskia, telling us that Yorick had just tripped and broken his arm!!  They saw his forearm hit a piece of furniture and bend where no joint exists - OUCH.  So, rocky start to the conference; we had to call an ambulance and Yorick was taken to the children’s hospital, along with his very shaken and worried parents.  I found out later that a very experienced FOP mom, the wonderful Amanda Cali from New Jersey, had been dispatched to the hospital to help the family explain FOP precautions to the doctors - absolutely no surgery, and use minimum force on the arm.  It turned out Yorick broke both bones, and had to be casted, but he and his family were back in the hotel by that evening.

We were, of course, distressed about Yorick’s injury, but events carried on.  The next stop was the Thames Valley Children’s Centre, a kids’ rehab facility where our conference was being held.  Dr. Fred Kaplan, the world’s foremost authority on FOP, was holding individualized patient clinic appointments, and Miranda’s was for 1 PM.  Unfortunately for us, Miranda decided to be a MAJOR crankosaurus at that time, and didn’t want to cooperate with the assessment…  That’s a 4 year old for you.  However, Dr. Kaplan was able to get a look at Miranda, and gave us some recommendations.  Most interesting - he suggested singing as a good recreational pastime.  He explained that singing is a good way to build lung capacity and diaphragm support.  Hmm, food for thought…  He also told us that the FOP researchers are now at the stage where they are able to test promising medicinal substances on animals, which is very exciting. 

Miranda was also assessed by Dr. Burt Nussbaum, an American dentist with expertise in caring for patients with FOP.  He had useful information for us as well.

Just after these clinics, we met our first ever adult with FOP, Ian from Ontario, who was next in line for Dr. K’s clinic.  We started talking to him and his parents, and hit it off right away.  Of course, surprise surprise, we shared diagnosis stories.  I’m guessing that probably happens everytime FOP families meet…

That evening we had a “meet and greet” reception at the hotel.  We had the very great pleasure of meeting several other FOP families, as well as Dr. Kaplan and his colleague, Dr. Eileen Shore, and Dr.  Jane Aubin, a Canadian bone disease specialist (also my parents, Helen and Malcolm were there - can’t forget them).  By that time, Miranda was in a considerably better mood (BIG relief for us), and we all had a great time.

Here's Dr. Kaplan with my husband Pete and my dad.

Miranda spent much of the evening dashing about like a kid on a lot of sugar.

My mom was a big help watching over a very hyper Miranda...

 The next day was “presentations” day.  Throughout the course of the morning, we had speeches and slideshows by Dr. Kaplan, Dr. Shore, Dr. Aubin, Dr. Nussbaum (the dentist) and Dr. Grunwald (anaesthesiologist with expertise in FOP care).  All of these bits contained interesting and useful information.  It was really exciting to hear these experts describe the discovery of the genetic mutation which causes FOP, and talk about the immense strides in understanding the disease process which they’ve made in the past 3 years since the discovery.  We came away with a good feeling that if all continues to go well, we could be looking at an effective treatment for FOP not too many years from now…  It was, of course, music to our ears.

Throughout these presentations, Owen and Miranda played in kids’ playrooms set aside for this purpose, under the watchful eye of either my mom or my dad.  I can’t thank them enough for doing this for Pete and me, so that we’d be able to listen to all the speakers.  Miranda and Owen had a lot of fun, and really got on well with Brooke, an 8 year old girl from Ontario with FOP.

We had family workshops during the Saturday afternoon, which were intense.  We broke into a couple of groups, and discussed our feelings around the FOP diagnosis and life with FOP.  We shared a lot of powerful emotions, and I’d say it was quite a catharsis.  This section of the conference was designed by Amanda Cali from New Jersey, who was tremendously helpful in helping us make sure our conference ran smoothly.

Saturday evening was the night of our conference dinner.  It was at the hotel, and was mainly just a time for unwinding and talking with our FOP community friends.  Miranda was in a great mood, and decided that our group’s president, Carrie Connell, was her new best bud.  She chatted with Carrie for much of the evening…  Kind of monopolized her, actually, the little monkey.

Saturday night marked the end of the conference, but we still had our first ever Canadian FOP Network annual general meeting the next day.  Also, Pete’s sister Anna had taken the train down from Toronto to visit with us, so that was cool too.  Anyway, we hashed through some business, and then heard some inspiring words from Dr. Kaplan to conclude the weekend.  On behalf of the CFOPN, Miranda presented him a box of luxury chocolates as a thank you.  He shared one with her, as can be seen by her bulging cheeks in the next pic…

A big thank you to our fave doctor!

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