These boots weren’t made for walking: Training Day 2

As some of you may know, the Boston Marathon is being run in Sienna’s honor by Kuber Sampath to benefit NORD, (National Organization for Rare Disorders) through Genzyme’s Running For Rare Diseases program. It is a great opportunity for us to gain exposure to the broader world of rare diseases and of course to raise awareness for FOP. You can read about Kuber here:

Over the next two months, we will be training along with Kuber (Sienna riding in her jogging stroller for a cumulative total of 26.2 miles) and spotlighting FOP friends beyond Sienna, who we will put on a wristband that Kuber will wear on race day. We are also going to donate $5 for each FOP friend who shares their story.

Below is our account of training Day 2: February 23rd
We bundled Sienna in two coats to avoid yesterday’s blanket fiasco and set off on another gorgeous 50-degree day.

lacing up!

lacing up!

I wore the giant rain boots above to try to avoid my soggy running shoes. Not exactly meant for walking, but they got me through the melting muck to try a new path. Today we started out walking to Playland, and after a near-faceplant (mine, Sienna was safely in her stroller) on the slippery wet boardwalk, we changed path and walked to the nature center. It was great to be out and to see the snow starting to melt into the water at the beach.

Of course, when we got as far away as possible, nature called for one of us, so let’s just say we had to find a creative solution…

On our way back, we took another break to feed some birds, which Sienna LOVED! 10 minutes later we were back on our way and saw a sign that said “please don’t feed the birds.” Sorry, birds. We won’t do it again. But really, sign, everything was frozen. What else were they going to eat?

Everyone was still doing well, so on our way back, we added on a few quiet residential streets and logged a total route of 3.94 miles! Not bad for a Sunday afternoon of tromping around in giant rain boots. Rare Dad was an over-achiever and went for his own run after our family walk. Gold star for him! (we might add separate runs going forwards, but I will only officially log the miles that Sienna travels). Sienna and I stayed home and made a delicious lasagna. Her cooking classes are starting to pay off. (“More cheese! MORE cheese! MORE CHEEEEESE!”)

Day 2 Log: 3.94 miles
(Kuber’s log today: 6 miles!)

Running total: 4.94 miles
Miles to go by 4/21: 21.26

(This weekend looks like it’ll be back in the 20’s to low 30’s, so we’ll either be getting creative or skipping a week…)

And today’s featured FOP friend is Brooke from Canada. You can read her story on the Canadian FOP network webpage ( or below!

March 2007, 6 year old Brooke and her family were enjoying March Break when Brooke complained about a bump on her arm she hurt while playing with her big brother Hunter. Upon examining the bump more closely her parents knew something was terribly wrong.

After an emergency x-ray and ultrasound at Children’s Hospital of Western Ontario Brooke was admitted for an Oncology consult. Brooke underwent an MRI, bone scan, more x-rays and bloodwork and her family finally received a devastating diagnosis of Fibrodysplasia Ossificans Progressiva.

Brooke is a loveable, bright and outgoing child who has matured quickly since 2007. She has been lucky enough to have an educational assistant at school who helps protect her from bumps, falls and everyday traumas that kids experience, as traumas cause disease progression.

At school, she has staggered entry and exits times to avoid the chaos of children pouring through the halls. She does not participate in a regular recess or gym class and lunches at the office or in her classroom. She is anxious about every near slip, bump or fall and fearful of any little pain in her body as she “doesn’t want anymore bumps”.

In the winter Brooke is cautious and worries about slipping on ice and falling. She no longer walks her energetic dog, goes sledding with the other kids at the hill after school or joins her friends in organized soccer, gymnastics and dance. Brooke has given up her two wheeler bike and the backyard teeter totters have been removed for fear that an innocent accident might cause her jaw to permanently fuse.

Brooke remains a cheery, outgoing little girl who loves High School Musical, lip gloss and the colour pink. She now has a pool in her backyard so she can enjoy the freedom of the water with her friends and she has a 3 wheel recumbent Banana Peel bike.

Despite the many changes that have been made in her life to protect her, Brooke does not fully comprehend the impact of her condition. FOP is unpredictable and progressive so Cam & Carrie try to protect Brooke without taking away her physical freedom and childhood before the disease does.

Brooke and her family live one day at a time with hope that the research, since the 2006 FOP gene discovery, will uncover disease modifying therapies and eventually a cure within the next 5 to 10 years. They now work alongside other Canadian and international families to raise awareness and fundraise for research.

* Brooke is our second story, which brings our donation to $10, and I am excited that I have lots more stories in the hopper, ready to go!

One thought on “These boots weren’t made for walking: Training Day 2

  1. Excellent blog Rare Mom!!! I will keep sharing these stories on FB for as long as you keep writing them. This is such a great way to continue to grow this community! Thank you!

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