Friends With FOP

Posted by Karen

In honour of Canada Day on July 1, a Thursday this year, our family took the opportunity for a four day weekend.  Ah bliss, four days of sleeping in…   As it happens, this will also be a long weekend for Americans because of Sunday, July 4, Independence Day.

Our family is both Canadian and American (Pete and I are dual citizens; I was born in USA to Canadian parents, and Pete was the reverse), so we can legitimately celebrate both days.  To my way of thinking, celebrating your country’s national day is a very appropriate time for thinking about all the great things your country has done for you.  In the context of Fibrodysplasia Ossificans Progressiva, I believe that Canada and the USA have given us alot.

Beginning with our home country of Canada…  I figure that if you’re going to be dealing with FOP, Canada is one of the best places to be. 

First, and probably foremost, I am extremely grateful for our country’s national health insurance system.  Because of our health care coverage, a child with FOP (or any other major health concern) can get all necessary medical examination and top notch treatment at no financial cost to the family.  In our case, this means Miranda’s been treated by a plethora of experts and therapists, and none of them charged us a red cent.  As the years go by and Miranda’s medical concerns grow, this is going to be even more valuable.  I am eternally grateful to the founding fathers and mothers of our healthcare system, who understood that you shouldn’t be bankrupted just because you are sick or injured.

Second, and on a related note, Canadian provinces have good benefits and programs available for people with disabilities.  In our case, for instance, Miranda’s been able to take advantage of a program whereby the provincial government pays for an extra caregiver to be present at Miranda’s daycare and preschool whenever she’s there.  She will have the same situation when she starts school as well.  Again, none of this has been at any charge to us, and so far it’s been amazing in terms of giving Miranda the chance to take part in regular activities.

Third, Canada coughed up a very determined lady called Carrie Connell.  Carrie’s daughter is about three-and-a-half years older than Miranda and also has FOP.  Carrie found out about her daughter’s FOP a month before we learned of Miranda’s, and after taking some time to adjust to the situation, Carrie set about forming a Canadian FOP fundraising and support group.  This is something which never occurred to me to do.  I never even formed such an idea, because I figured that with only fifteen or so people in Canada having FOP, a group would never get off the ground.  You know what?  Boy was I wrong.  Because of Carrie’s drive and determination, we now have the Canadian FOP Network, a registered charity and not for profit corporation, and last year the CFOPN was able to contribute thousands of dollars to FOP research.  Thanks Canada for Carrie Connell.

And so, what about the United States, my country of birth?   Equally important to us, the USA has given us the International FOP Association and the “Centre for Research into FOP and Related Disorders” at the University of Pennsylvania.

The IFOPA was founded in 1988 by a wonderful woman called Jeannie Peeper.  Jeannie herself has FOP, and when she started the IFOPA, there were no FOP support groups and there was no organized FOP research program anywhere.  Because of Jeannie’s efforts in forming the IFOPA, all of that is different now.  In just 22 years, the IFOPA has grown into a charity with paid staff and the capacity to contribute half a million dollars each year to support FOP research.  On a more personal level, the IFOPA is invaluable to families coping with FOP in terms of providing support, information and a community to share with.

The FOP Lab at UPenn, which receives a significant chunk of it’s funding from the IFOPA, is run by two very dedicated scientists, Dr. Fred Kaplan and Dr. Eileen Shore.   The FOP Lab has been up and running since around 1991, and has been the driving force behind finding a cure or effective treatment for FOP.  I had the great privilege of touring this lab in 2009, and it was awe-inspiring to see how hard this crew is working to vanquish FOP.  Oh, and lest I forget, the lab was in part the dream of another important person, Amanda Cali, an FOP mom who was determined to see FOP research take place.  Thank you, thank you, thank you to America for giving us Amanda Cali, who dreamed up the FOP Lab, and Drs. Kaplan and Shore who made it a reality.

So these are my thoughts as we enjoy Canada Day and Independence Day…  But what, you may ask, did we actually do to celebrate these important holidays?  Well, on Canada Day – we just ran errands and did chores, because it was raining!!  Stupid weather.  However, it was much nicer yesterday, so we piled in our minivan, picked up our kids’ grandparents and went out for a picnic at Deas Island Park.  We did all the right stuff – barbecued hot dogs, ate chips/fruit/pie, and played soccer on a grassy field (my son Owen’s team was FIFA World Cup hopeful Germany, while Miranda’s team was Scotland).  Miranda surprised me by her ability to easily walk half a kilometre in the park; I thought she might get tired due to her limited back musculature from FOP, but she was perfectly fine. 

Hooray for summer, and hooray for Canada and the USA!

My kids, Owen and Miranda, eating raspberries they picked from their grandmother's garden after coming home from our holiday picnic.