Meet the honourees

Posted by Karen - July 31st, 2015

Coming up the day after tomorrow – it’s the Walk for FOP!

I don’t normally blog on a Friday, but here I am coming at you… I thought to myself, why not share a short profile of each of the 3 wonderful gals whom we’re honouring at our Walk on Sunday?

As she is my kid, I’ll start with Miranda. As you probably know, Miranda is 10 years old and has fibrodysplasia ossificans progressiva. Miranda’s FOP became active and was diagnosed in 2007 when she was age 2. Unlike many people with FOP, Miranda was never misdiagnosed – she simply went through a period of several months when we puzzled over the strange bumps which appeared and disappeared on her head. When FOP was finally recognized and diagnosed, it was a huge shock. Seriously, what?? She has what? It took us quite a while for us to bend our minds around this strange condition. In the mean time, FOP ravaged Miranda’s spine and upper arms, leaving her with 2 almost fused shoulders, a fused spine and partially fused elbows within a year and a half of diagnosis. Recently, FOP has been spreading to Miranda’s legs – she can’t fully straighten one leg at the knee, and can’t fully bend the other, and her left ankle has a piece of bone which pulls her heel up off the floor. Despite all this, Miranda is fun-loving, intelligent and friendly girl who enjoys life. She is especially interested in Maplelea and American Girl dolls, Minions, swimming, singing and hanging with her friends. Miranda in San Fran

Next up – Kathleen, a young woman who lives on a farm with her family in Saskatchewan. Kathleen is now in her 20s, but was diagnosed with FOP as a young child following a knee operation. You see, before diagnosis, Kathleen developed an FOP flare-up in one of her knees. When the resulting piece of bone was discovered, doctors recommended the logical thing – surgery. Now, if you know anything about FOP, you know that that is absolutely ┬áthe wrong, wrong, WRONGEST thing to do. The surgery caused FOP to go haywire in young Kathleen’s knee, fusing it completely. Shortly thereafter, FOP was diagnosed, and it did the usual thing, travelling up and down her spine, shoulders, hips and knees. Today, Kathleen remains as independent as possible, using a Segway transporter to take her from place to place. Kathleen enjoys life on her family’s farm, especially her interactions with the farm animals.

Kathleen D 25-05-2014 10-18-21 AM Finally, this year we also Walk in honour of a third person – Alexandra, who is 12 years old and lives in the Vancouver area. Alex’s FOP was only diagnosed in 2014. Alex’s mom and I shared notes and learned that by interesting coincidence, both our daughters were assessed by Medical Genetics in April of 2007. Miranda’s FOP was recognized and diagnosed at the time, while Alex’s was missed altogether. In any event, Alex was lucky for a number of years, in that her FOP didn’t become active until she was 11 years old. What happened at that time was that Alex, who was involved in competitive dancing, started having trouble putting one of her heels on the floor. FOP had caused a bony piece to develop in the ankle, and when discovered, again – SURGERY was the recommendation. Alex was on the surgical wait list when, fortunately for her (and how weird is it to say that), she developed her first FOP flare-up on her neck. Back she went to the hospital, where she ended up in Medical Genetics once again, and this time saw the same doctor who had diagnosed Miranda. Needless to say, the surgery was called off… ┬áToday, Alex and her family are still adjusting to FOP to some extent, but here they are taking part in our fundraiser. We’re glad to have them, Walking in Vancouver. IMG_4863

Anyway, this Sunday we Walk in honour of these 3 beloved people to raise money for research into FOP. If you’ve already donated to our cause, THANKS A MILLION for your donation. If not, there’s still time! Please, please, please help us help the researchers develop a treatment for FOP. Research is going gangbusters these days, and I feel like a treatment is just hovering on the horizon… Indeed, the first ever drug targeted specifically at FOP, Palovarotene, is currently in Phase 2 clinical testing. Will this be the one?

If you’d like to donate, you can do so online at www.walkforfop.com. Or, drop me a line and I’ll tell you how to donate by cheque, which may be the better method for donations over $100 as it saves on website credit card fees.

Miranda, Kathleen, Alex and all people with FOP would love a future secure in the knowledge that FOP doesn’t have to mean immobility from head to toe.

One Response to “Meet the honourees”

  1. Steph says:

    Absolutely ok to post pic!! Thanks for this!! <3



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