Why We Walk: The Infusion8ters

In 2014, our family participated in our very first Walk— as Sammy’s Superheroes. Our son, Sam, was just 6 months old. Hemophilia runs in our family, and we knew that it was likely Sam would be a hemophiliac. We also knew that, while challenges would arise, he could live a happy and full life thanks to the many medical strides that had already been made before he was born. Even knowing all of this, though, as first-time parents, there was still much to learn both about Sam and managing the day-to-day life of a hemophiliac.

We decided to partake in the 2014 Walk for a couple of reasons. We knew how important it is to support research. At that time, Sam’s great grandfather, also a hemophiliac, was still alive. It was incredible to know how much had changed in his lifetime—improved treatment options that Sam and others continue to benefit from. We felt strongly that this research must continue, so we walked to support research.

We also walked because we wanted to make a connection with NYCHC and with other families who share our reality. Having a rare disease can be isolating but the support and connection that comes from meeting others and participating in these events is important to all of us, especially Sam. None of his friends would understand what it is like to have a bleed or to be hospitalized on bed rest or to get infusions.

But seeing and meeting other kids who share that understanding would be very nice for Sam and we wanted him to start making those connections early.

This year, Sam is 10 and we are so excited to be walking again—just now, we’ve updated our team name to The Infusion8ters!

Sam now understands what Hemophilia is and what it is like to live with this disease. Now, we all do, too. This year, we really hope Sam is able to feel a strong connection to both the bleeding disorders community as well others who have bleeding disorders like he has. He is also so excited to have friends and family join him on the walk and we know how special their support and love will make him feel.

It is crazy to think how much has happened in a decade. We have all learned so much about Sam and living with this disease. Perhaps our greatest lesson though has been how lucky we are for the enormous support system we have around us. This year, we walk also to honor them–in honor of our family and friends who always lift us up in our harder moments and are always cheering us on, our amazing team at our Hemophilia Treatment Center who we would be lost without, and for NYCHC, who does so much to support so many families including our own!