Some important people, and also (oh yeah) the ankle

Posted by Karen - July 1st, 2014

Posted by Karen

The International FOP Association has recently been posting “bios” of its founding members. I find these fascinating. I can’t imagine what it was like before families living with Fibrodysplasia Ossificans Progressiva were all connected, but that time did exist. And the IFOPA’s founding members remember it all too well…

So how did those connections begin to form? Well, once upon a time, there was a young woman named Jeannie Peeper. Jeannie lived in Florida, and she had FOP. Unsurprisingly, since there were probably about 200 and-some-odd people in the USA with FOP at the time – the mid-1980s – Jeannie didn’t know anyone else with FOP. Which is sad, because Jeannie really wanted to know others with FOP. This was well before the days of widespread internet usage, and there was no organization dedicated to the FOP cause at the time, so Jeannie didn’t know how she could meet others with her condition. One day, however, she met a doctor whom, she learned, treated a number of FOP patients. With this physician’s help, Jeannie was able to contact some of these other patients, and she started a pen pal club to help them keep in touch… That little club was the nucleus of the International FOP Association.

To read Jeannie’s bio, and the bios of 10 other founding members, go to: http://www.ifopa.org/news-and-events/25th-anniversary.html.

Owen, JP and me 09-11-2013 9-59-03 PMMe with Nancy Sando, founding member

A brush with history! At the 25th Anniversary celebration of the IFOPA last year, I got the chance to meet with Jeannie Peeper (the goofy boy on the left is my son Owen) and other founding member Nancy Sando. I love these ladies so much! And where was Miranda while these were being taken? Probably running around and making mayhem with her pal Erin, ha ha…

To me, the mother of a young child with FOP, the stories of the IFOPA’s founding members are extremely inspiring and hopeful. What I mean by this is that I read these stories and I learn about people who were carrying the heavy and painful burden which is FOP, and yet leading, for the most part, interesting, happy and successful lives. I can’t begin to tell you what a huge comfort that is to me. Do I want an effective treatment for FOP so that my daughter doesn’t have to live with the effects of FOP forever? OF COURSE I do… But I’m also a realist, and I know that treatment or a cure isn’t guaranteed to happen, and if it doesn’t, then my girl needs some good FOP role models. In the IFOPA founders, Miranda has such people.

And speaking of Miranda, here’s my update on Miranda’s broken leg – this week, she was finally given the medical go-ahead to start weight-bearing. Yay yay yay!!! The first day or two we took it slow, and Miranda took just a few steps. However, as each day has gone by (and it’s been 5 days now), her walk has become stronger and better. It’s still far from perfect, as her ankle muscles and tendons tightened up and became stiff while her leg was immobilized, but it’s improving every day. Importantly as well, she has no pain at the site of the fracture (which is, according to “doctor internet”, ha ha ha, a typical healing result for 3 weeks post injury of a “buckle fracture”).

Did Miranda’s leg suffer any FOP flare-up as a result of this injury? Well, it certainly didn’t in the hip, thigh, knee, calf, upper ankle or toe areas. As for around the base of the foot, and the lower ankle, it’s a bit hard to say because M still has stiffness there from immobilization due to the ankle brace. However, I’m not seeing anything suspicious, and so even if some new FOP bone did form, it must have been pretty minimal. Good good good. Now, just need to keep our fingers crossed for no “reactive flare-ups” of either of her legs caused by the awkward body posture related to limping.

PS – We’re only 4 weeks away from our Walk for FOP fundraiser on Saturday, July 26 at Calgary, Alberta’s beautiful Baker Park! All proceeds raised will go to the Canadian FOP Network (www.cfopn.org), our Canadian FOP charity, which directly funds important FOP research. To donate to our cause on-line, please go to www.walkforfop.com. Or, if you’d like to donate via personal cheque made out to the Canadian FOP Network (better for donations over $100, so as to save the credit card fee), post a comment to this blog and I’ll contact you personally with my address. Thanks!

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