July is coming up, which means…

Posted by Karen - May 15th, 2016

Yes, it’s here again – fundraising time… I know you were all waiting for this with bated breath (ha ha).

For the third year running, our family will be doing the Walk for FOP this summer. The date this year is Sunday July 31, 2016, i.e., the Sunday of the August long weekend in Canada. Once again, we’ll be co-hosting this event with Kathleen Degenhardt and her family. Kathleen is a young woman who lives in Saskatchewan, and just like my daughter Miranda, she has fibrodysplasia ossificans progressiva (FOP). Our goal is to raise as much money as we can to benefit the Canadian FOP Network, a Canadian charity which supports research into FOP. We’ll be doing a walk and post-walk picnic in Calgary’s beautiful Baker Park, and we want YOUR donations to our cause!

Kathleen and Miranda at last year’s event.

In the off chance you haven’t heard of FOP before, it’s an extremely rare genetic disorder which causes muscles, ligaments, and tendons to become inflamed through “flare-up” of the condition, resulting in swelling, pain, heat, and redness at the affected site. Over the course of a few weeks, tissues within the flare-up site become converted to bone. Random bits and pieces of bone thus accumulate in the body, progressively fusing joints and limiting movement. Flare-ups can happen spontaneously, but can also be caused by trauma to the body – even fairly minor trauma. My daughter Miranda became symptomatic with FOP at age 2, and by age 11, she has FOP bone at or near her spine, shoulders, elbows, both knees, and one ankle, and all of these body parts have some restriction of movement (with some being completely locked). As for Kathleen, she also became symptomatic as a young child when a routine childhood immunization – an intra-muscular injection which her body treated as trauma – caused bone to develop in her leg, and now as a young adult, she copes with FOP bone in numerous parts of her body.

I think it might be interesting for me now to give you a little window into how FOP affects our daily life. So, let’s look at what’s going on at the present… A little over a week ago, Miranda noticed that opening her mouth wide made her “neck hurt”. I had a look, and discovered a small but obvious swelling on the underside of her chin where it meets the neck. I immediately had to get my girl started on Prednisone, a powerful anti-inflammatory, so as to minimize the amount of swelling. Flare-ups in that body part are worrisome because if they spread into the throat area, the associated swelling can cut off the person’s breathing and result in loss of consciousness or even death. This is truly not something to mess around with. I’ve been watching this flare-up carefully, and repeatedly (and somewhat obsessively) reminding Miranda to tell me if she starts having any trouble breathing, swallowing, or with drooling. Now as it happens, none of those frightening consequences have (so far) come to pass, and I *think* the swelling has stayed localized, and may even be shrinking. This is a major relief…. (Gah.) Based on previous experience, if everything keeps going as well as can be expected, this flare-up will ultimately resolve and leave behind a bit of bone under Miranda’s chin.

See that fullness under the chin? That's the flare-up.

See that fullness under the chin? That’s the flare-up.

On a more mundane note, Miranda, Pete, and I have been looking at various options for summer day camps for Miranda. My girl has a lively, intelligent mind, and sitting around at home watching TV in the summer just doesn’t cut it, which is what happens if I leave her under her 14 year old brother’s care while I work. Registering for summer camps is not an easy thing, though, because Miranda needs extra help with activities such as getting a hoodie on and off, carrying her backpack, reaching items anything further than 6 inches away from her body, preventing her from being bumped around and/or knocked over by other kids, and more. Therefore, any camp we send her to has to either (a) provide a staff member or volunteer to help her out, or (b) allow us to send an assistant (whom we have to pay) along with with her. We’ve signed Miranda up for one camp that provides a volunteer (yesss!), but it’s just 2 weeks long and in late August. What about July, before our 2 week mid-summer vacation? Let’s just say that the search continues…

FOP is a thoroughly awful, crappy disease. I badly, badly want a medication to give Miranda so that she will suffer no more rotten flare-ups. Even better, maybe someday she’ll be able to get surgery to remove some of her existing bone, allowing her more freedom and independence. Sigh… This is my dream. (And hey, guess what? A medicine for FOP will probably also be helpful for much more common conditions such as osteoarthritis, heart valve calcification, ossification following joint replacement surgeries, and more.)

Amazingly, the kind of future I envision *could* actually come to pass. There have been some amazing and very promising breakthroughs in research over the past few years, with one potential medication, Palovarotene, currently in clinical testing, and a number of others poised to start testing in the near future. My point is, THE FINISH LINE IS IN SIGHT. If we keep up the fundraising efforts to support FOP research, it might not be too long before we can stare FOP in the eye and say, “You are going DOWN!”

And this brings me to the most important part of today’s blog post – please donate to support our fundraising efforts. Please please please please please, pretty please with sugar on top. You can donate on-line by going to our site at http://www.walkforfop.com. Click on either “Donate to Participant” (to choose a specific person or team to support) or “General Donations”. Or, you can also contact me privately or leave a comment on this post, and I’ll get in touch and tell you how to send us a cheque. (NOTE – for donations larger than $200, I recommend the cheque route – website donation processing fees are pretty big at that level.)

Thanks ever so much! Your anticipated donations mean the world to us. I encourage you also to share this post.

9 Responses to “July is coming up, which means…”

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