When Tracie and her husband Tim had their son Zach, everything seemed perfect. Shortly after his birth, doctors noticed some bruising on Zach. He also did not stop bleeding from the foot prick he received – a standard procedure for newborns – which had happened several hours earlier. That’s when the doctors asked Tracie and her husband if they knew anything about hemophilia.
“We had never even heard the word hemophilia,” said Tracie. “We were absolutely terrified.”
Zach was put in the Intensive Care Unit and was diagnosed with Severe Hemophilia A. “So many things were running through our minds – what does this mean for Zach and what does this mean for our family.”
Tracie and her husband learned quickly how incredibly important advocating for Zach would be. “We learned that it’s OUR responsibility to educate others, including our elected officials, so that they can understand just how costly this chronic illness is and how important it is to care for this segment of our population. Teaching others about living with a bleeding disorder is one of our primary goals and will continue to be for the rest of our lives.”
Tracie admits that when Zach was younger, she did not think that educating others was her problem. She wanted to keep her son healthy and flourishing. “Focus on Zach, take care of him, and everything would be ok,” said Tracie. She now believes that advocating and educating others “is ALL of our responsibilities.”
When Tracie first attended Washington Days with GLHF, she felt woefully unqualified. She soon realized that, due to her first-hand experience, she is viewed as an expert on hemophilia. “When we got to D.C. to meet with legislators, something I NEVER thought I would do, I was afraid to talk to people. What I realized very early on was that is the responsibility of the entire bleeding disorders community to educate others.
Advocacy is about sharing our stories about living with a bleeding disorder to lawmakers.”
“I really do think that we all have a voice – and I think we really made a difference, especially Zach,” said Tracie. “As a parent, I feel I need to use my knowledge to help our legislators understand what we go through and what we need. It’s a great honor to tell our story and help educate others.”