With no known family history to speak of we were absolutely blindsided with Thomas’ diagnosis of severe Hemophilia A. After his 3 day NICU stay where he received fresh frozen plasma, a blood transfusion and factor VIII infusion before discharge, our first few weeks of his life were spent with a lot of fear and grief as we wondered how this life long disease and the necessary treatments would affect both Thomas and our family as a whole.
We were so fortunate to get plugged into Hemophilia of South Carolina within Thomas’ first month of life. Because of Hemophilia Federation America and our local chapter we are refilled with hope that Thomas can still live his best life and not let his hemophilia define him. We want to pay it forward so future families have the same access to the information and community that has helped us put our lives back together.
After learning the importance of maintaining good physical health to protect Thomas’ joints and muscles from spontaneous bleeds we knew we wanted to be intentional about developing good exercise habits as a family. Given our love of Star Wars and our desire to “pay it forward”, joining Team Resilience seemed a perfect marriage of interests. We hope taking the boys on our training runs will help foster a love of physical activity that will benefit their health for years to come.