You spend so much time preparing for every possible scenario when you're pregnant and getting ready to start a family, but nothing prepares you to hear the words, “We believe he has hemophilia.” I remember sitting in the NICU, watching our newborn continue to bleed, and feeling the bottom drop out from under us. We had no family history, no understanding of what hemophilia even meant, and no idea where to turn.
Hemophilia A is a genetic bleeding disorder caused by a deficiency of clotting factor VIII, a protein the body needs to stop bleeding. People with severe Hemophilia A don’t bleed faster, but they bleed longer, and even small injuries—or sometimes no injury at all—can lead to dangerous internal bleeding.
Walter was diagnosed with Severe Hemophilia A, and I learned that I am a carrier of the gene that causes the mutation. That moment changed our lives, but it also led us to the Brandywine Valley Hemophilia Foundation and a community that showed us what true support, understanding, and strength looks like.
Since our diagnoses in 2018, we haven’t looked back. And in 2021, we “doubled down” when Arthur was born and was also diagnosed with Severe Hemophilia A. Our journey hasn’t been what we expected, but it’s one we do not walk alone. We are blessed with a wonderful circle of family, friends and a foundation that consists of other families affected by bleeding disorder!
As Team Bolinski Blood Brothers we are able to give back to the foundations that has given us so much. We hope you can join us in supporting this great non-profit all volunteer run organization!
