Breaking the Rules

“No Running!”

This is one of the most important rules in our house – something I say (ok, yell) so frequently that I am pretty sure Sienna thinks it’s my personal mantra. I’ve recently switched to “walk please!” since we are working on manners, but the rule is the same. Running = big trouble.

Today, Sienna is physically capable of running. But if she took a terrible tumble, we wouldn’t just be looking at a bump or – at worst – a broken bone like most kids. We would be looking at a bump that could turn into an FOP flare-up, where muscle turns to bone, resulting in permanent loss of motion in whatever was injured. We do want Sienna to still have “regular kid” experiences while she can have them, so we let her play and run in soft sand or soft grass. Here she is at a family wedding this fall:

DSC_0125 running

But understandably, safety is our #1 priority. We have carpets over 90% of our floors and I do my best to enforce the “no running in the house” rule.

So it is a bit of a contradiction that we happily announce that we are taking part in Genzyme’s Running For Rare Diseases program for the second year in a row, to benefit NORD (National Organization for Rare Diseases). This year, Genzyme has a team-within-a-team for FOP: another patient partner with FOP (AJ) and THREE runners. Sienna has been paired with Jared (running the Boston Marathon) and Betsy (running the Providence 1/2 Marathon). Two runners running in Sienna’s honor!! 39.3 miles, not to mention practice miles probably in the hundreds!

But back to the contradiction. As Sienna gets older and wiser every year (she is 4 right now), she has started to challenge inconsistencies she identifies in our parenting. This one caught me by surprise, though now I realize that it shouldn’t have. Have I mentioned before that FOP does not impact intelligence?

Here is pretty much how the conversation went:
Me: Sienna, good news! You are part of the Genzyme Running for Rare Diseases program again! Do you remember last year?
Sienna: Yes! Do I get to run?
Me: No, running isn’t safe for you yet.
Sienna: When can I run?
Me: When your special medicine is ready. The doctors and researchers are working on it, but it’s not quite ready yet.
Sienna: Why do THEY get to run? It’s against the rules.
Me: Well, they don’t get bumps like you do. But they want to raise awareness for rare diseases like FOP so that your special medicine can be speeded up. They are running quite long distances and have to do very long training runs. You have TWO people doing this in your honor this year! Betsy AND Jared!
Sienna: Ok! I’ll probably run too. I don’t really like rules.
Me: Ok, but let’s keep your running only on the beach until your special medicine is ready. Not in the house.

I think that’s a fair compromise.

Back to Running for Rare Diseases. We are fortunate to have gotten to know Betsy over the past couple of years through her work for the IFOPA, most recently as Global Research Development Director. I even got to see her last month at the IFOPA board meeting!

Jared is a new friend who we hope to get to know better through this program.

Last year Sienna and I completed a cumulative marathon in Kuber’s honor (Kuber was her running partner who ran the Boston Marathon last year). We completed it by pushing her in the jogging stroller, having her pedal her big wheel, and a variety of family walks. This year we’d like to complete one and a half marathons in Betsy and Jared’s honor, but I’m not yet sure if we will be able to. We’ve been finding ourselves a little over-extended this spring, and this is what our neighborhood looked like just a couple of weeks ago – not exactly walking weather!


Also, we are hugely impressed by Betsy and Jared. They are both in the Boston area, which had record amounts of snow this year, but they are actively training through it. Boston strong!

So we will give it our best without over-committing ourselves this year. We plan to break a few rules as soon as the weather warms up and we will see how it goes on the mileage front. We are excited to cheer Betsy and Jared on, and are honored that Sienna is able is participate in this wonderful program again!

Here is Betsy’s page:

And Jared’s page:

And of course, a link to last year’s successful experience:
And a link to learn about NORD:

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