Summer vacation, and Walk for FOP 2014

Posted by Karen - August 3rd, 2014

Posted by Karen

We got back from our 2 week long vacation yesterday evening. Sorry for the absence from blogging, but taking a break from everything was… Heavenly!

Before we left for vacation, I was a bit unsure how it would be this year. This is because barely 6 weeks earlier, my daughter Miranda, who is 9 years old and has Fibrodysplasia Ossificans Progressiva, had taken a tumble and suffered a fractured tibia (shin bone). The fracture was just a hairline, and resolved quickly, but unfortunately the trauma caused an FOP flare-up in Miranda’s lower calf muscle. As a result, a new small bit of bone formed in the muscle and shortened Miranda’s calf muscle, making it impossible for her to stretch out her Achilles tendon and put her heel flat on the floor. When my girl walks, she now has to walk sort of “tip toe” style with her left foot, and when we started vacation, her gait was still quite awkward and weak. However, not being ones to let FOP get in the way of what we want to do, we crossed our fingers and set out on vacation despite the walking issue. To cope, we brought a rental wheelchair along with us to use whenever Miranda was tired.

Our first vacation stop was Invermere, British Columbia, where we met up with my family for the weekend (family includes Baba and Grandpa – aka my mom and dad – plus my sister Susie and her daughter Ella, plus my brother Blair and his wife Erin, her mom Kathy and their kids William and Katie). This has been a family tradition for a few years now, but the first time that my branch of the family was able to take part. All of us stayed in a little motel in the middle of town, where we were close to the festivities of an annual town fair. That weekend, we hung with family/went to a pancake breakfast/watched fair events/shopped at fair stalls/drank huge lemonades, and went to the beach! Totally fun.

Miranda and Baba 19-07-2014 3-46-54 PM

Miranda chilling with Baba at the beach after fair (Miranda sporting puppy dog face paint)

Next vacation stop was Calgary, Alberta, where my family lives and where I grew up. We stayed there for a week, and had a marvelous time. We did some touristy type things, but mostly just enjoyed spending time with our people. As time went by, Miranda became more stable on her feet – which was good, because it meant she was able to play with her cousin Ella, who is the same age, and their respective 18 inch girl dolls (Maplelea, Journey Girl, American Girl)! Playing dolls with Ella is always a highlight for Miranda. ;-)

Pedicures! 23-07-2014 7-29-04 PM

Girl cousins getting pedicures from Auntie Erin

At the end of that week, we did an FOP fundraising event. We had done some version of this fundraiser each year for the previous 3 years, but this year, for the first time, we joined forces with another FOP family. Kathleen is a lovely young woman with FOP who lives in Saskatchewan, and lucky for us, she and her family agreed that it would be a great idea to do a joint event. And so, Saturday, July 26 was the day we did a walk and picnic for all who wanted to participate, both families having gathered donations for the Canadian FOP Network (our Canadian FOP registered charity) from friends and family over the previous several weeks. What a great day! We absolutely lucked out on the weather, which was sunny and warm but not too hot – perfect for a walk around beautiful Baker Park and a simple picnic of hot dogs, chips, fruit, pop, brownies and cookies. Also cool was that our extended families had in common, both having originated in farm communities in Saskatchewan.

Walk group edited 26-07-2014 2-16-24 PM

Group shot after the picnic – Kathleen and Miranda in the middle, Kathleen wearing black sweater and seated, and Miranda standing and wearing green T-shirt.

We’ve still got some donations trickling in, but at last count, we were closing in on $16,500 in donations. SOOOO fantastic, especially this year, as the FIRST EVER post-gene discovery FOP drug trial began this month. We are delighted to have been able to provide such a generous amount toward the ongoing research efforts. I am very much hoping that we’ll be able to put together a joint effort for next year as well.

And, how did our family’s individual fundraising teams do, you ask? Well, much like last year, it turned out that most folks wanted to attribute their funds to the Owen and Miranda team rather than the Karen and Pete team. In short, the kids whipped their parents’ butts, with more than double the amount of donations! All in good fun. :-)

Speaking of fun, apparently my nephew William, age almost 7, was quite impressed by the Walk event. Check out the little “Cure FOP” jackets he made for his Zhu Zhu pets… I LOVE THIS!!

Zhu Zhu group 03-08-2014 9-33-39 AMZhu Zhu 03-08-2014 9-33-39 AM

Anyway… The day after the fundraiser, Pete, Owen, Miranda and I packed up our stuff, and we drove back to Invermere, and then on specifically to the Panorama Ski/Summer resort nearby. We spent the next 5 full days in Panorama basically just vegging out. We swam in their fabulous pools, played mini-golf, ate ice cream and went to the beach. Oh, and saw a whole bunch of deer and gophers.

I’m relieved to report that Miranda’s walking limitation turned out, in the end, to be manageable. We did use the wheelchair a number of times, but that said, Miranda’s walking strength and stamina did improve a lot as the days went by. Also, her walk is looking a lot more natural, though she still has to walk on the ball of her left foot.

And now? Back to the real world!

PS – If you still want to donate to our fundraiser, you can do so on-line at www.walkforfop.com. Click on either General Donations or Donate to Participant. Alternatively, pay by cheque made out to Canadian FOP Network (reply to this post and I’ll contact you privately with my address). Thanks!

 

One Response to “Summer vacation, and Walk for FOP 2014”

  1. karen lachance says:

    Hi Karen, my daughter Bri (whom you’ve met, knocked her knee into a cofffe table in feb and her leg is now stuck at a 45 degree angle. she walks on her tip toes. We are looking into geting her an orthotic insert built into her one shoe. It’s about $250.00. she is on disabillity and it’s taking a while to get approved. Best of luck.



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