My son with hemophilia is living his dream — and mine

Life can change in a moment. Sometimes, all it takes is a phone call — that a loved one has passed away, that you’ve lost your job, or that you are free from cancer.

Those moments often create core memories — highly emotional, significant experiences that have a lasting impact. Here’s one I remember: 1:20 a.m., on July 30, 1996, when the hospital called to say my mom had died. I heard myself scream, almost as if it were someone else. I threw the phone, my husband jumped out of bed, and the nightmare began.

Only weeks earlier, on June 25, I’d had another core memory when my first son, Julian, was diagnosed with severe hemophilia A. I had expected a healthy baby, but instead, my beautiful boy had a bleeding disorder I knew nothing about.

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Living a dream

Julian, now almost 30, is an actor and singer trying to make a living performing. He recently landed a job as the understudy to both leads in a show, and when one lead didn’t go on, Julian stepped in and has been killing it in the role. Now, the show’s producer has asked him to play the lead in Nashville, one of the next stops on this off-Broadway national tour. Seeing his dream come true is life-changing.

It reminds me of another dream.

When my husband and I began to learn, nearly 30 years ago, how to treat Julian’s hemophilia, there was excitement in the community about new advances in factor replacement therapy. Recombinant factor products are classified into three generations: the first, which used animal proteins and human albumin; the second, which used human proteins and no albumin; and the third, made without animal or human proteins.

Since the days of whole-blood transfusions, fresh-frozen plasma, and cryoprecipitate, hemophilia treatment has improved greatly, but I remember hearing that one day there would be a factor product with a longer half-life, one you could inject under the skin. That one day, gene therapy would become a reality.

And here we are.

Treatments have improved

There is still no cure for hemophilia, but treatments have improved and offer many people a better quality of life. No single treatment works for everyone, but there are more options now — more dreams to chase, dreams that have come down through generations of members in this community. It still amazes me to see things, once thought impossible, become real. I hoped, and now that hope has come true. It feels incredible.

For Julian, who travels from state to state and show to show, managing his bleeding disorder is easier than ever. And seeing his dreams come true fills my heart to the brim because I know what it took for him to get here. I remember the nights of infusions and the fear of bleeds that came without warning. I remember the appointments, the steep learning curve, and the constant vigilance. I know how hemophilia once limited his world, and how carefully we helped him push those boundaries.

Now, I watch him live his dream on stage, sharing not only his talent but also his story. A diagnosis may shape the lives of children with a bleeding disorder, but it does not set the limits of who they can become.

Yes, core memories leave their mark. They split our lives into before and after. But not all “after” moments result in loss. Some arrive with joy, confirmation, and the quiet realization that what once seemed impossible is now happening right before our eyes.

The phone still rings, and sometimes, it brings a celebration. Sometimes, it tells you that your child, the one you once held so tightly and worried about, is out in the world, living fully, bravely, and beautifully. And sometimes, it tells you the dream you carried for them has become their own.

For more information, the Hemophilia Federation of America offers a history of bleeding disorders.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.