Having hemophilia is an interesting challenge for an individual. Throughout my life, I have tried to learn as much as I could about this condition and find a way to overcome the adversities it often presents. I thought I had this thing down to a science, but I had no idea what to expect as the father of a daughter who carries the hemophilia gene.
When my wife Tori and I first learned we were having a baby, we were excited and scared like any new parents, regardless of hemophilia. I knew the basics, like how someone with hemophilia passes down the gene to their kids through the chromosomes. As a hemophiliac, I knew that having a boy would mean removing hemophilia from our family tree, but having a girl would mean that she would be a carrier. Like many new fathers, I hoped to have a boy for two reasons: first, to stop the hemophilia in our family tree, and second, to have someone more like myself to help teach and grow into a young man. I hoped to have someone to do “boy things” with like playing sports, getting dirty, going to the beach, and so on. However, after we found out we were having a girl, I realized how I was thinking about it all wrong.
For the most part, I do not treat her any differently than if she was a boy (she is so funny and has such a cute little personality that makes it hard not to love her all the time). I encourage her to do all of the things that she enjoys and let her pursue her passions. She plays soccer, golf, dances, and even does gymnastics.
Tristan, who is now four years old, knows her daddy has hemophilia and has to give himself shots every so often. She is still too young to understand what being a carrier means, but she tells everyone that she has the hemophilia gene (which is pretty cute).
At first, I was scared that she might exhibit some bleeding or bruise easily like her Grandma (my mother). Thankfully, we have not seen that thus far, but I know we still have a long road to go as she grows up, gets married, and starts to have kids.
My hope is that by the time that she has kids (30 years from now!) there will be far more advances in treatment and technology-maybe even a cure. I’ve accepted that if she decides to have kids, there will be a 50/50 chance of her son having hemophilia. I worry about this, but I also know that it’s out of my control if this were to happen. If it were, I would be able to give him advice and support as some- one who really gets what it’s like to live with a bleeding disorder.
One of the positives of hemophilia is the community. I have learned so much about compassion, care, and strength growing up in this strong community. I would not be the person I am today if it wasn’t for the people who create advocacy groups, educate through symposiums, and foster the spirit that the bleeding disorder community has had for years. A big challenge for me was learning to self-infuse. It was one of the scariest things I have ever done. With the help and encouragement of great friends, I was able to learn a skill and over- come a challenge I never thought I could. I’m excited for Tristan to be involved in this community as she grows up and meets more of the people that have helped me become who I am.
It’s not easy being a father of a daughter who is a carrier of the hemophilia gene. However, when I look at my sweet four-year-old girl, I hope that she will not see hemophilia as a challenge, but instead as an opportunity to grow, learn, and become a better person.
Trevor Ekema has mild Hemophilia A and currently lives in Texas with his wife Victoria and 4-year-old daughter Tristan. Trevor has attended hemophilia summer camp since he was 7-years-old and is now a counselor at camp in Texas. Trevor was part of NHF’s NYLI (National Youth Leadership Institute) and is currently a mentor of the Big Brother, Big Sister Program.