A lot of us in the Rare Disease world refer to the ups and downs of the diagnosis (or hunt for a diagnosis) as being a marathon. This weekend, I discovered that our life is far more than just a marathon…
14 weeks ago I took on the task of training for Boston. Having never completed a single race before I felt a little odd taking on such a hallowed race- but I was eager to become an even more active R4RD team member than my family was the year before. NORD and Rare Disease advocacy has become the root of my being.
And so I trained, and I got to know my amazing Patient partner, Erica. We primarily texted, and at times I wish there was more that we could do to get to know each other- a lunch out as friends casually catching up, rather than texts as each of us found the time to write.
My family arrived in Boston with about 30 minutes before the R4RD dinner on Saturday night. We rushed around the apartment that we had rented to try to get the kids dressed to look presentable then headed out the door. We arrived at Harvard Medical School and decided it would be humorous to post a picture of the kids under one of the med school signs, because, well, it’s just doctor humor I guess. Much to our chagrin, Madi couldn’t just smile nicely for the phone– we gave up and entered the dinner.
People were mingling around, and I quickly found Erica. It was awesome to just see each other. It sounds silly, but I almost feel like this must be what it feel like when you meet someone with online dating 🙂 My kids quickly took to Erica and we enjoyed a pleasant dinner. Afterwards, Phil said a few quick words, and then introduced several speakers. I sat in that room engrossed in the very thoughtfully put together talks. I was moved. Me, as a parent of a child with a life threatening rare disease, was moved. I was inspired. I was honored to represent them.
Sunday quickly flew by with some sight seeing and picking up my bib with Erica. On Monday morning, Madi’s runner partner from last year picked me up for our breakfast at Genzyme.
Part way through breakfast I moved myself over to a table of runners who came from out of state to represent rare diseases and once again I was moved. It was the gentle talk about struggles with little things, the chance at clinical trials, and the stories continued.
One of the executives from Genzyme stopped by. He filled us in on how the factory that we were at produced a medicine for Gaucher Disease. I was immediately thrown back to meeting a family who had two daughter’s with Gaucher just two short years ago. Beautiful, happy, completely typical girls- and this plant was the reason that they were beautiful, happy, typical girls.
This became so much more than fundraising and representing the Rare Disease Community at a marathon. This was about lives changed, lives touched, lives improved because someone cared.
And then we hopped on our bus and headed to the race course. The beginning of the race was awesome, there’s sort of a rockstar high you get from giving high-fives to rows of screaming kids as you jog by.
As I was prepping myself for Mile 14, where the Running for Rare team was set up, a guy ran up next to me. I looked over at him and he reached his hand out. I popped out my ear bud and reached out my hand and introduced myself. He never told me his name. He told me the name of his syndrome, and then thanked me for running for him. I wish I had the wherewithall to have told him how honored I was, or how awesome I thought he was- but I was caught completely off guard. I wish I had burst forward with energy to catch up to him to tell him to stop at mile 14, but he, with his syndrome, was taking the marathon by storm — and I couldn’t catch up to him.
Throughout this year, at home, and while training for this marathon, I have come to realize that our lives can simply be the ups and downs of a marathon– but if we give ourselves the time, there are so many amazing things we can experience that cannot be defined by a starting line, a finish line, or any heartbreak hill.
I am so honored and thankful to have experienced this team- with all of its amazing runners, and even more amazing patient partners. Phil has created something magical up in Boston, and it has been life altering to take part in it. <3