Foster Family's Story
Our road to parenthood was not an easy one. Early on in our relationship, Mark and I discovered we both wanted children and were eager to fulfill the role as “mom and dad.” Soon after our wedding, I was diagnosed with PCOS, and we quickly learned that our road to parenthood would not come quickly or easily. After three years of trying, we reached out to a fertility center in Omaha and with their assistance, we conceived our daughter Ava. As a carrier of Hemophilia A, I felt great relief in having a daughter.
After Ava’s third birthday, we were ready to try for a second child, a sibling for Ava. We sought fertility assistance in Denver with a world-renowned doctor. After four IVFs and four miscarriages, we were dejected and brokenhearted and came to the realization that more children were not in the cards for us.
Three years went by, and we enjoyed our life as a family unit of three. Then one sunny day in June, I admitted to Mark that I had not felt good for several days. I blamed it on a “flu bug,” and he teased that I acted “pregnant.” I rolled my eyes at his response—how could that really be possible? To our complete shock, Mark’s joke was actually a reality and we discovered I was in fact six weeks pregnant! (Our first pregnancy conceived without fertility assistance!)
We discovered early on in the pregnancy that I was carrying a boy. Weston’s birth was a beautiful, miraculous event filled with many tears of joy and gratitude. Soon after his birth, a significant bleeding episode required an eight-day stay in the NICU. It was then he received his diagnosis of Hemophilia A.
Living in rural western Nebraska, our priority is educating ourselves, our family and caregivers in Weston’s life about Hemophilia. Hemophilia is such a rare disease that not many people know of, so bringing awareness out to our small town and to western Nebraska is a priority of mine. The Nebraska Chapter of the National Hemophilia Foundation has been instrumental in providing us with educational information and opportunities as well as networking with others. We want to give back in any way possible, so we began with organizing a satellite walk in western Nebraska. We were able to raise more than $2,000 from the Western Nebraska Hemophilia Walk as well as raise awareness about this rare disorder! We look forward to continuing to be involved with the Nebraska Chapter and networking with other families.
We are fortunate enough that Weston does not need to receive factor on a regular basis. However, with that comes a certain level of anxiety. We find ourselves continually playing the guessing game of whether we should give him factor. Our priority is to teach him to advocate for himself as he continues to get older. It will be paramount that he is in tune with his body and can communicate to us when he is experiencing a bleed. In the meantime, we watch him like a hawk, while still giving him the freedom to be a rambunctious little boy!