By Nicole Kerber, NEHA Unite for Bleeding Disorders Walk Team Captain
Posted: January 10, 2023. Originally printed in NEHA’s Fall 2022 Newsletter.
Our son, Lawson, was born in May of 2020. We were overjoyed by the arrival of our first child but our hearts were broken when a routine procedure went awry. He was bleeding uncontrollably and was rushed to the NICU in need of a blood transfusion. On our way to the NICU, a doctor explained that he had severe hemophilia A. We were shocked and knew little about the bleeding disorder. We didn’t know anyone living with the condition. We had so many questions and felt utterly shattered. We were so uncertain as to what Lawson’s future would look like.
After we brought Lawson home, my husband and I agreed that to get through the fear we were feeling, we needed to learn everything we could and become active in the hemophilia community. Our search for resources and support lead us to NEHA. We read through NEHA’s website and saw many photos of happy, thriving children. This was the future we wanted for Lawson! We quickly became members and started attending virtual events during the pandemic. We “met” other parents and listened to their stories. They sounded just like ours. After months of feeling uncertain and alone, we finally had people who understood us. We found comfort in talking to other parents who shared our experience.
In October of 2021, we were able to attend our first in-person NEHA event! The Unite for Bleeding Disorders Walk was such a positive experience for us. We finally met face to face with the people who had helped get us through that scary and uncertain first year of Lawson’s life. Fundraising for the event encouraged us to share publicly about Lawson’s diagnosis. In many ways this was therapeutic for our little family. We wanted our friends and family to get to know Lawson first and his diagnosis later. The Walk was a perfect way for us to share Lawson’s story in a positive light!
I look at our first Unite for Bleeding Disorders Walk as a celebration. We had finally moved past the fear and anguish we felt during those first months and had arrived in a place of gratitude. We were grateful for our thriving little guy, our NEHA community, our generous family and friends, and of course, modern medicine. While we know there will be difficult times ahead, we now have a group of people who will be there for us when we need them. Our NEHA family is there simply to lend an understanding ear, or, to answer those tough questions and empathize with concerns that no one else quite gets.