Tomorrow is Thanksgiving Day in Canada. On the list of things I’m thankful for, my daughter Miranda’s Fibrodysplasia Ossificans Progressiva isn’t one of them… HELL no, not thankful for FOP.
If I could wave a magic wand and make FOP disappear, I absolutely would do it without hesitation. But that, of course, is pure fantasy. The fact is, my beautiful, beloved daughter has FOP, and it’s not going away. Miranda will continue to have flare-ups, and they will continue to gradually freeze her joints and restrict her movement. It’s a bitter pill to swallow.
FOP is reality for us – just like the sky is blue and we breathe air. There’s no point railing about what we can’t change, and we had to move on and accept life as it is. So, turning back to the theme of thanksgiving – within the reality of Miranda having FOP, I have lots and lots to be thankful for. In no particular order…
1. I’m very thankful that several years ago, a woman named Jeannie Peeper wanted to meet and get to know others who, like herself, have FOP. With information provided by a few medical professional, Jeannie set about contacting the precious few people with FOP whom she could discover. Soon, she had a regular newsletter to connect the pioneering group (that was, of course, in the days before the internet was widely used). Jeannie’s efforts were the beginning of the International FOP Association. Over 20 years later, in 2009, the IFOPA has a membership of several hundred people with FOP and their families, and is a registered charity in the United States. The IFOPA is invaluable… I can’t imagine life with FOP and no IFOPA. The IFOPA contributes significant funds each year to the Centre for FOP and Related Disorders at the University of Pennsylvania (the “FOP Lab”), to keep the drive for a cure going strong. Equally valuably, the IFOPA provides the central means for FOP families to contact each other, communicate and draw mutual support for each other.
2. On a related note – the IFOPA established a Yahoo Group called FOP Online. Probably most people out there are familiar with how Yahoo Groups and other listserves work, but in case you’re not, the gist of it is that interested people sign up to be able to send e-mails to FOP Online and also receive e-mail messages from all other people signed up for the service. This is a phenomenally good way to share information… Anyone can post a concern, and receive messages from anyone else who cares to respond, and everyone can see both the initial message and all the responses. Shortly after Miranda’s diagnosis, we joined the IFOPA and signed up to be on FOP Online. I was overwhelmed, and EXCEPTIONALLY grateful for the outpouring of love and support we received from other families when we introduced ourselves to the FOP Online community. Now, more than 2.5 years later, I feel like we have good friends all over the world who all share common experiences of living with FOP. I’ve gotten to know incredible, fantastic people from places like The Netherlands, Sweden, Argentina, Great Britain, Serbia, Australia, United States of America and even within Canada. I am very, very thankful for all of these friends and for FOP Online, which introduced me to these people.
3. A family we’ve come to know well is the McCloskey family of Woodinville, Washington, USA. Naturally, I am NOT thankful that their sweet daughter, Erin, has FOP. But again, it’s reality that she does. Within that reality, I’m extremely thankful that Erin McCloskey in only a half-year younger than Miranda, and that she and her family live so close to us – we are only a 3 hour drive away from each other. Miranda and Erin have a lot of fun playing together when they meet, and I think it will be invaluable when they grow older to each have a friend with FOP who lives close enough by for regular visits. Miranda and Erin will be able to share their experiences with FOP as they grow older together, which is great. Additionally, it turns out that the McCloskeys have similar beliefs and values to those of me and my husband Pete, and we get along together very well as adults and parents. I count Suzanne McCloskey as a good friend.
4. Which brings me to… This website, “Friends With FOP”. I’m no-where near computer literate enough to set something like this up myself, but ever since Suzanne and Alan McCloskey invited me to help them out on this website, I’ve enjoyed it immensely. I find it fun to blog, and it’s a good way of sharing information, especially with others who aren’t living with FOP.
5. Where would this list be without the FOP Lab? There aren’t enough words to express how thankful I am for the work done by Drs. Shore and Kaplan at the FOP Lab to find effective treatments and a cure for FOP. Because of their efforts, there actually IS a strong chance that before Miranda reaches adulthood, a medication will be available to STOP FOP flare-ups in their tracks. Wow. It takes my breath away to think of it.
6. I’m also extremely thankful for the incredible local community supports which exist for our family. We have a terrific pediatrician and medical geneticist, and we’ve also received excellent services from the BC Centre for Ability. The Centre of Ability has been instrumental in helping Miranda do so many things she couldn’t otherwise do, like attend daycare, learn to swim and ride a bike.
7. Carrie Connell of London, Ontario, Canada… I’m thankful that Carrie had a dream of starting up a Canadian FOP Charity. Because of her efforts, we had a Canadian FOP Conference with excellent attendance, we’re inches away from obtaining valuable Canadian charity status, and we have a Canadian FOP community established. And all of this has happened since early 2008 – amazing.
8. I’m thankful for Facebook! The IFOPA and FOP Online gave me contacts with new friends all over the world, but Facebook has allowed me to actually socialize with those friends.
9. Last, but certainly not least, I am very thankful for all the family support we’ve received since Miranda got diagnosed with FOP. Both the Friz and Munro sides of our family have been extremely supportive and helpful to us. My dad, Malcolm Munro, has even gone so far as to become a member of the IFOPA board, but I am as equally thankful for his efforts as I am for my mother Helen’s suport, as well as that of my in-laws, Kirsten and Carl. And of course, I’m thankful for my husband Pete, my big boy Owen, and… Miranda herself.