Jordyn’s Walk – a benefit for a girl with FOP

Posted by Karen - November 18th, 2012

Posted by Karen

When we met Jordyn Valona this weekend in Gig Harbor, Washington, I asked my daughter what she thought of her.  Miranda said, “She’s pretty.”

Lovely Jordyn with 2 young cuties

Miranda was right – Jordyn is pretty, but tough as well.  I say “tough” because at age 16, she not only has to deal with Fibrodysplasia Ossificans Progressiva, but also having the spotlight on her and her health concerns for a fundraising benefit (what teen doesn’t value personal privacy above almost anything else?).  I absolutely applaud Jordyn’s family for holding an event to raise money for Jordyn’s medical needs – they stepped up to the plate and did what they needed to do – but that doesn’t mean it was probably easy for Jordyn.  Still, no matter how uncomfortable it might have been, Jordyn was there with a smile on her face, wearing her colourful tutu (a bunch of the participants did as well) and greeting and thanking everyone who attended.  I think Jordyn showed great poise and maturity, and I was impressed.

So here’s how we came to be at this event…

Pete, me, Owen and Miranda - check out our cool T-shirts!

Our family drove down to Gig Harbor, Washington on Friday night.  After the usual struggle to get organized and out of the house (LOL), we drove for 4 hours in rain, wind and weird roadside signs threatening us of huge travel delays ahead (said delays never materialized).  Upon our late-ish arrival, we had the great fortune to get a free – yes, free! – night’s stay at The Inn at Gig Harbor, which had generously provided this suite to Jordyn’s mom, Arica, as a contribution to the fundraiser.  Our suite was great, and very nice – had a separate bedroom with king size bed for me and Pete, and 2 queen size beds in the main sitting room.  Our kids were thrilled to each get their own big bed, ha ha.

The next morning, we got up and ready and drove to the site for the fundraiser, which was at Jordyn’s high school’s football field.  We started out by meeting Jordyn and her mom, and Jordyn provided Miranda with her own personal pink and green tutu complete with a zebra ribbon tied onto it (zebra to symbolize the rare disease aspect of FOP).  Next we enjoyed a pancake breakfast, and then spent some time checking out some booths set up to sell merchandise including kitchen tools, cosmetics, baked goods and tickets for a prize draw.  Miranda was particularly interested in this stuff – her eyes got very wide as she took in the cupcakes (of which we bought several, of course).

Before long, our good friends the McCloskeys arrived.  Suzanne, Alan and their daughter Erin (who is 7, just like Miranda), drove in from their home in Woodinville, WA.  It was sooo great to see them!  Our girls hadn’t seen each other in about 2 years, but nevertheless they hit it off right away.  Erin was proud to show us her new power chair, which she now needs to use part-time due to a bone spur developing in her knee.

Miranda and Erin with Erin's sweet new ride.

Before long, the walk/5K run began.  Round and round the track we went…  Suzanne and I walked together, while Erin and Miranda hurried off together ahead of us.  My boy Owen, who is 10, was determined to run as much of it as he could (to keep in shape for his ice hockey playing, natch), so he set off at his own pace, with Pete (dad) following behind.  Us moms had a great time talking and getting caught up, and the girls enjoyed themselves a lot too.  After a little while, Erin abandoned her chair so that she and Miranda could run around part of the track – causing heart-in-mouth fear syndrome for Suzanne and me as we envisioned them tripping over their own feet, or over other runners coming up from behind, and plowing face first into the track (shudder; though none of that did happen).

After the walk/run ended, Miranda and Erin had simultaneous appointments to have their hair styled by two talented volunteers who had a both set up for that purpose.  Erin got a couple of beautiful French braids in her long, blonde hair, while Miranda’s red-brown shorter tresses were curled, fluffed and arranged into a lovely work of art.  While this was happening, a news reporter from the local Komo television station came up and interviewed us to contribute to a piece they were doing to promote Jordyn’s event and help raise awareness.  You can check out their story here:

http://www.komonews.com/news/local/Community-turns-out-to-help-girl-with-rare-bone-disease-179827281.html?tab=video

At that point we were thinking of finding a place for lunch when we happened to spy Whitney Leckenby, another Washington state resident who has FOP.  I’ve never met Whitney before, so was delighted to see her arrive.  We talked to her for a few minutes, then took the opportunity for a photo of all 4 “FOPers” in attendance.  Very cool.

4 great gals who happen to have FOP - the tall ones are Jordyn (in hood) and Whitney; the short ones are Miranda (in hood) and Erin.

Around that time, the rain was coming down pretty hard and the event was drawing to a close.  The McCloskey family and ours weren’t done visiting yet, so we drove to a local family restaurant.  For the next 2 hours, we had a great time eating, talking and laughing while Miranda and Erin played with their respective Maplelea and American Girl dolls (NOTE – one cool thing was that Erin’s doll had her own wheelchair!  Is there any accessory you can’t get for those dolls??  Love it!).

I love this photo - check out the girls' hair and Erin's doll in her wheelchair.

Finally, we had to reluctantly conclude that it was time to leave.  We said some regretful goodbyes, then made a pit stop for Starbucks drinks and a few 12 packs of Cherry Coke Zero (which we love and which we can’t buy in Canada – the Coke, not the S’bucks).  We then drove the 4 hours back to our home in Burnaby.

What a fun weekend…  I’m totally happy we went.  I was glad to support Jordyn; all the money raised at the event will go toward paying for her medical and mobility care needs, which unfortunately aren’t otherwise funded.  I don’t know how much they raised, but I hope it was a bundle.  Additionally, it’s always wonderful for us when we can get together with other FOP families (especially the McCloskeys).   I really value that bond, which we so seldom get to experience.  At a prevalence of about 1 in 2 million, people with FOP are among the rarest of the rare.

 

3 Responses to “Jordyn’s Walk – a benefit for a girl with FOP”

  1. helen munro says:

    What a great time you had and so great that you went!

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