Our Timeline: The Robinson Family
Our Timeline
Written by: Kristina Robinson, NEHA Community Member, Volunteer, and Unite Walk Chair.
Posted: May 27, 2024. This article was originally shared in our Spring 2024 Newsletter.
Laughter filled my backyard, and we shared the warm feeling of community. Four other moms sat on my patio as I hosted a Community Driven Program on behalf of NEHA. We had dinner, chatted, laughed and shared stories. It may sound like a group of long-time friends getting together, but these were people I’d known for mere months. The stories we shared were unique to each of our families but relatable in a special way, in a way not always possible, even with close loved ones.
Rewind a few years prior, to May 2021. I handed my phone to my sister and asked if she thought I was overreacting. “A bruise the size of a lemon on Axel’s knee and chest can’t be normal, can it?” I was worried.
I left the pediatrician’s office waiting for the feeling of reassurance to set in. It was nothing, he is just learning to crawl. I’d just keep an eye on it and that was that. But that feeling of reassurance never came. We were soon told to go to the ER immediately, and then hours later, we were sent to the pediatric hematology/oncology unit at Mass General Hospital (MGH).
My precious little boy was not covered in bruises because he was learning to crawl. Axel had severe Hemophilia A with factor levels less than 1%. The bumps and falls typical of a ten-month-old were now far scarier than just a week ago.
After a few days and many conversations, questions and worries, surgery was scheduled to place a port in my baby’s chest. The next day, he was intubated in intensive care when the port surgery failed. Axel’s vein was punctured in the process of placing the port. Instead, a PICC line was placed in his leg for easy access for all the factor he’d need to heal this injured vein.
Four days later, Axel was released from the hospital, and we began our new normal routine with home visits every twelve hours for factor infusions as he healed from the surgery. It was a whirlwind. A week prior, I knew next to nothing about hemophilia. Now, my son had been diagnosed with it and boxes of supplies were arriving at my home as nurses were showing up at a staggeringly frequent clip.
And then, somehow, time goes on. Days and months went by. We learned more about hemophilia. About managing it, about living with it. We found a team of doctors and a treatment regimen that worked really well for Axel, and, for us as a family.
Looking back now, I can see how hard our entry into this new normal was (a baby in the ICU is gut-wrenching), but how lucky we are, too. We have access to great care and a wonderful support network of family and friends. But perhaps most importantly, we became connected with the New England Hemophilia Association (NEHA) and just as quickly found our second family and home away from home with the people we met through the organization. At NEHA, we found such a special community. The staff at NEHA work so hard to enthusiastically bring resources to the bleeding disorders community as well as providing meaningful opportunities for connection; the organization has truly shaped our relationship with Axel’s new normal and what it means for our family.
The support and sense of belonging that we felt at NEHA inspired our family to make a team for the 2021 Unite for Bleeding Disorders Walk. We immersed ourselves in raising funds and awareness for bleeding disorders. It was so meaningful to see those efforts celebrated at our first Walk, as we were surrounded by family, friends and our new NEHA community. Axel even got to take home the second-place trophy at his first ever Walk, just four months after being diagnosed.
Continue through the timeline and there are yet more… surprises. We did genetic testing and learned that I am an asymptomatic carrier. We participated in our second Walk and were blown away by the support we received as our team raised over $20,000. We launched @the.axe.factor on Instagram to share our story and raise awareness about Axel and his bleeding disorder. Last year, our team’s momentum continued as we raised more than $37,700!
From countless events that provided opportunities for our family to connect with people who can relate, share new insights, and especially, that inspire; to the night on my patio with my new friends, it’s been an eventful journey. A journey that is still unfolding. Axel is just three years old, our family only two years into our new normal. We know that there are unknowns, and that much lies ahead. But the constant is our new hemophilia community. Our NEHA family, in just a short time, has become integral to our lives.
Our timeline with NEHA began in 2021, but it doesn’t have an end date – and largely because of the amazing work of NEHA and this special community – we are less scared of this diagnosis and more eager to continue to learn and advocate. Along our journey, we’ve met amazing people, both locally and from all over the world, with a connection to this condition. We are so invested and excited to continue our journey and our timeline with NEHA.
Kristina and her husband, Paul, live in Norwood, MA, with their two children: Daisy and Axel. Kristina served as our Unite for Bleeding Disorders Volunteer Walk Chair in 2023 and is serving in this role again in 2024.