So it begins the start before the start of the 2014 Boston Marathon.Â It is an honor to be part of the Genzyme Boston Marathon Team, an honor to run on behalf of this organization, all the patient partners, and for the national organization of rare diseases in support of a life-saving/life-changing cause.
To many this might sound odd, to those that know me it makes sense.Â Itâ€™s not the training thatâ€™s the tough part, itâ€™s not the running that terrifies me, itâ€™s not the â€œself-doubtâ€ of breaking through that wall to complete 26.2, itâ€™s not that timer stress of setting that â€œPRâ€, as this marathon has absolutely nothing to do with a PR, itâ€™s not the fundraising (looking forward to Karaoke night!), no, no, no….itâ€™s bigger than that, bigger than you and bigger than me…
Itâ€™s the emotion, the emotion of human connection, of patient partner connection, of community connection, of connecting with a community of so many that you thought was once so small, so rare and now from this tremendous growth of emotional connection has transformed the community, has transformed YOU.
Meet my buddy Elijah and his awesome sister Sophia, amazing mother Melissa and loving Father David.
Elijah has Rothmund-Â Thomson syndrome (RTS).Â Â People with RTS have an increased risk of developing cancer, particularly a form of bone cancer called osteosarcoma.Â Eli was born with bones missing in his hands and thumbs.Â He had his first surgery at one month old to insert a feeding tube in his tummy and is fed through a syringe in his stomach daily by mom Melissa.Â Â At nine months old he had his soft palate cleft repaired and at 13 months he had surgery to open one prematurely fused suture in his skull and reconstruct his forehead. At 3-years-old he had his feet removed so that one day he can walk using prosthetics. Elijah has had more medical intervention than many late in life.
We met for the first time via a video conference call the other day from my apartment; Elijah is one very happy, outgoing child.Â He has a personality that will light up a room.Â The Ramirez family is an amazing family, who truly understands the meaning of life, their love for life radiates through, and itâ€™s contagious!
During our video conference, Mr. Elijah of course requested a tour of my apartment.Â I told him this is an unannounced visit and Iâ€™m not very organized at the moment, however, for you Elijah yes 😉
Mr. Elijah Ramirez and Family received the VIP treatment, a tour of my ridiculously small, disorganized, slightly embarrassing studio apartment.Â Which I had to point out to him very few have seen; heâ€™s one lucky 7 year-old!Â (His parents laughed).Â As I carried my laptop around the room he asked about family photos, my empty fridge as grocery shopping is much-needed; we even had a glimpse of the outside, east coast SNOW!
It was only fair he reciprocates he said.Â As Eli and his sister Sophia gave me a tour of each of their rooms, I learned how much energy the Ramirez kids have and loved every minute of it, Sophia is an amazing artist and Elijah LOVES trains.
Dad David pointed out Sophiaâ€™s lights hangingÂ from her bedroom ceiling which involved a 6ftÂ ladder and a couple of hours on a Saturday.Â I communicated â€œYa, know Sophia, you could just use laundry detergent to draw on your walls, it glows in the dark once dry, so youâ€™ll have art work and lights all in one, Tide detergent works the best!â€ 😉 Her eyes immediately lit up as she turns to Dad David, David and I both had a good laugh about it.Â I reassured him I LOVED it as a kid, like that really mattered, itâ€™s their walls!Â I then communicated my professional Boston Marathon running wardrobe is in your hands kiddos! As long as I have the GZ shirt on the rest is fair game for Elijah and Sophia.Â Sophia immediately pulled out this hot pink Mohawk wig she had lying around her bedroom floor, perfect I yelled, love it!Â We made a note of the Mohawkâ€¦..
Back to the emotions, connections, awareness, if the Ramirezâ€™s journey doesnâ€™t touch you who knows what will.Â Itâ€™s the connection and the want to do more, this experience has tugged on me personally in a much deeper way than any miles could have, life is different.Â The more social media Iâ€™ve posted to, more home town friends have re-connected with me, to unfortunately reveal they themselves have recently given birth to babies with a rare disease, so small, yet so big, they are connected nowâ€¦..we all have our storiesâ€¦â€¦another reminder why we do what we doâ€¦
Until our next video call Ramirez Family; action items noted Hot pink Mohawk and Tide detergent, stay tunedâ€¦