Sienna’s training for a marathon… and bringing her FOP friends!

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.

Read about Kuber here:

I’ve been thinking about how we can make the most of this great opportunity, and have come to 2 conclusions:

1) We need to train along with Kuber
2) We can raise awareness for FOP beyond Sienna

1) We need to train along with Kuber

Why should Kuber get to have all the fun? Sienna is going to do a whole marathon too.

Now, don’t get scared. Those of you who know FOP know that running could lead to overexertion or a dangerous fall, and either of those could cause a devastating FOP flare-up. I think she said it best herself when she told a little boy on the playground the other week “Be careful! I’m very delicate.” Also, she’s three. (Ok, three “AND A HALF” if you ask her.) Overall too young and too delicate to run a whole marathon.

But we want Sienna to appreciate that a marathon is being run in her honor and to understand what it means. So Rare Dad and I are going to push her in her super-comfy jogging stroller for a total of 26.2 miles between now and the marathon on April 21st in little bite-sized chunks. Sitting for an entire marathon at once also wouldn’t be great for her (or any three and a half year old, really). But going on lots of weekend family walks? Super fun! Our dog Pepper is also coming along for the ride (walk).

The weekend of the marathon, we will tell Sienna “You know all those walks we’ve done this spring? Add them all up and THAT is what Kuber is going to run today!” This is also a good excuse for us, both former athletes, to start to get back in shape as the weather warms up. Let’s hope the weather cooperates enough for us to achieve our goal!

We started last weekend, as it was a rare glimpse of spring in New York with two days of 50 degree weather. Here is our story from our first day training.

Day 1: February 22nd

We bundled Sienna up in a coat, a hat and a huge blanket, and started out. Weeks and weeks of snow had been plowed and frozen into rock-hard mountains on either side of the sidewalks. Though the snow was starting to melt, our jogging stroller’s wide wheel base kept getting stuck. And some driveways had plowed their snow onto the sidewalk, leaving us having to backtrack to the next plowed area to get out. At one point, Sienna’s blanket slipped off just as we broke free and we ran it over with our wet, slushy wheels. Luckily, Sienna thought it was hilarious and we were able to re-fold the blanket so she still had a dry part underneath to keep her warm.

We made it to the town park, which has a very wide path, but is not paved, so we were up to our ankles in dirty slush. My running shoes were not looking so smart… Sienna enjoyed getting out, but she was ready to get back home after a few minutes. Pepper really enjoyed getting out, but didn’t love the slush. Poor pup. She got a bath after this one.

Day 1 Log: 1 mile (but boy we worked hard for it!)
(Kuber’s log today: 18 miles!!! He is ready!!!)

2) We can raise awareness for FOP beyond Sienna

FOP is ultra-rare, impacting 1 in 2 million people. To borrow the math of a fellow FOP mom, if the earth has about 7.2 billion people, then there are about 3,600 people with FOP. Only about 800 of those people have been diagnosed, which means there are about 2,800 people who don’t understand what’s happening to them, who could be receiving improper medical treatment, and who don’t have the hope for a cure that we have. Karen’s post with the math and a terrific global perspective on FOP is below:

Luckily for those of us who have been diagnosed, we have a very close community and I know lots of them. I wanted to take this opportunity to raise awareness for other people’s FOP stories in their own words. I’ve asked our community to share their stories and we will donate $5 to Kuber’s fundraising site for each story shared. I will also make a wristband or a little card for Kuber with each person’s name and picture so he can think about each of them during his run.

daniel FOP
Today I’m featuring Daniel, this cutie above, who is a 7-year-old boy living in Houston, TX, who was diagnosed shortly after Sienna. His family’s website is and here is his diagnosis story. I was super proud of making my own powerpoint presentation for doctors with Sienna’s progression of symptoms and pictures. But Daniel’s mom actually diagnosed Daniel and found and contacted Dr. Kaplan all by herself via internet searches. I am just in awe! Here is her story:

In September of 2012, our normal, healthy, active six-year old son Daniel started acting very strangely. He would cry when I took him to Kindergarten saying, “I just want to be with you. I just want to snuggle you.” We’d never experienced this kind of separation anxiety before, and kept reassuring him that he was fine. He also started complaining his side hurt, although there was nothing to see, and I again reassured him he was fine.

After a few weeks of this, we noticed a strange rock-hard lump on his left rib cage. The lump didn’t really hurt him that much, but it baffled me why it was there. I showed it to my physical therapist friends who said it was probably just a swelling from playing too hard and should probably just get it looked at. The pediatrician didn’t know what to make of it and ordered an x-ray that came back normal. He said just to watch it, and if it changed to take him to an orthopedic doctor. The lump actually went away one day, and I remember thinking, “Well that was weird, but at least it’s gone.”

A week later it showed up again higher in his shoulder and much larger. This is where I have to sound my ‘woo woo’ alarm. For those that know me, I’ve been speaking to both of my deceased parents (mom and step-dad) for years though a medium. In early September, before any of this happened, my dad started a reading saying he wanted to talk about Daniel as he was having a major auto-immune reaction. At the time, I didn’t know what questions to ask as he had no symptoms, but now all my efforts where in looking at this as an auto-immune response. I tried to explain the source of my information without sounding crazy, and my pediatrician ordered lab work that all came back normal. The orthopedic doctor took more x-rays that didn’t show anything. By now the swelling was huge covering most of his upper left back, wrapping around his chest and swelling up his abdomen. We had an ultrasound and it showed the swelling as “dramatic edema.” I was in total panic, but not having a clue what to do for him. Daniel was miserable, staying home from school and we were trying to reassure him that he was ok.
daniels bumps

I scoured the internet for clues, but everything was coming up as tumors. I insisted we look at his immune system, and the only way to get in front of the pediatric rheumatologist was to take him through the ER at Texas Children’s Hospital. My pediatrician agreed and ordered an MRI, and on Friday October 26th, 2012 I got up at 4:00am to get ready to take him in. I Googled to see what we’d be looking for in an MRI, and looked at all the symptoms one more time.

ifopa site
God somehow put me on a webpage (I still don’t know what I clicked to land on it), and the banner image totally took my breath away. It was the picture of the crooked big toes that are the telltale sign of FOP…Daniel’s toes. I knew in an instant this was it. It was much bigger than anything I could have ever possibly imagined. I woke up my husband and in disbelief we read the webpage. It’s a great website full of fact and pictures of the progression of FOP. But for terrified parents just finding this on our own, it was like a horrific nightmare. Dr. Kaplan (the brightest angel on Earth!) has his HOME number on the website. I called and woke him up, crying, babbling, going on about being a mom in Houston and I think my child has this and I’m about to take him to the ER right now but I think he’s got this thing on your website and his big toes are crooked and he has hearing loss and all the things you say about FOP but I don’t know what to do and you have to help us…

Dr. Kaplan graciously listened, asked a lot of questions, and requested some photographs and x-rays. I happened to have all of the information, and within 2 hours he emailed me back saying he had no doubt of this diagnosis. He said to stay home, don’t go to the ER as they won’t know what to do with him, and he contacted my pediatrician. We told Daniel, and he was very confused not to be going to the hospital. But we told him we’d found a doctor that knew what was going on with his back, and that we just needed to rest and stay home.

I have never cried so hard as I did that day. My sweet husband Jeff was so strong and said, “Well at least he’s here with us. It’s not like he got hit by a bus. It’s going to be ok.” My friend Kira came over and we got on our knees and prayed. We prayed for him to be healed, for us to have the strength to go through this with him, for our family to endure this with grace and love.

On 12-12-12, Daniel and I flew to meet Dr. Kaplan in Philadelphia. He was so warm, compassionate, and dedicated to helping us and all the others with FOP. The genetic testing has confirmed Daniel has the classic FOP mutation.
daniel & mom

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