Passing the torch to the next generation of bleeding disorders advocates

More than 30 years ago, my wife, Cazandra, and I began our work in the bleeding disorders community after our oldest son, Julian, was diagnosed with hemophilia. Since then, we have served on the boards of several chapters and presented workshops across the country. We love the work because it matters, and because it gives us a chance to empower our community. Our goal is simple: Caz and I tell our story in the hope that one person or family might hear a kind word and feel less alone.

We want to pay forward the same kindness we received when Julian was diagnosed as an infant. We didn’t know which way to turn until the phone rang one day. Caz picked up and had her first conversation with someone in the bleeding disorders community. At the time, she didn’t realize how important this call would become, but her eyes filled with tears as a calm, caring voice eased her fears.

Afterward, Caz and I sat down to discuss the call. Stunned, she told me that the person on the phone had repeatedly said, “This was not your fault. You did not give your boy a bleeding disorder on purpose.” Caz turned to me and asked, “How did she know my thoughts?” Through tear-stained eyes, she continued, “I feel like he has hemophilia because of me. I passed down the gene.”

I assured her that what our dear new friend had said was true. Although she had passed down the mutated gene that causes hemophilia, she had never intentionally “given” Julian the condition.

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Within a few weeks, that phone call had changed our lives. We joined the board of directors of our local National Hemophilia Foundation chapter, hoping to increase awareness of bleeding disorders and raise funds for research and product development. Along the way, we met new people and formed fast friendships in a world we hadn’t even known existed.

When our second son, Caeleb, was born, our connection to the community deepened. We continued to serve our blood brothers and sisters, but Caeleb’s needs showed us how much more there was to learn. As he faced various complications, we spent more time with our medical team building a road map to help our son. Caz and I continued to serve as advocates and speakers, sharing Caeleb’s unique challenges with hemophilia.

Making room for our children

As time passed, our sons grew up and began managing their own health. Caz and I no longer attended meetings as often as we once had, and we slowly lost touch with some of the people who had meant so much to us. Life happened, and our connections began to feel like they were from a past season of life. Still, we cared for our community, and when we ran into dear friends at an event, we talked as if no time had passed.

The difference was that our role had changed. Our sons, who seemed to grow up in an instant, had taken over the work of advocating for themselves. With grayer hair than we had 30 years ago, we’ve stepped back and let Julian and Caeleb take charge. We’ve passed the torch to the next generation.

Blood brothers and sisters never stop caring for one another. As we grow older, we’re simply making room for the incredible men and women whose little feet, big voices, squeals, and play once filled the room. With every breath in my body, I give thanks for the people who have shared their lives with us. They were angels at a time when we needed a little heavenly direction.

When I see my amazing friends, I smile. Here we are, growing older, sharing stories, and still laughing when we enter a room. I have come to understand that there is a time to serve our community, and a time to allow a new generation to take over the work. There is no telling what new stories they will add to the tapestry of the bleeding disorders community.

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 consult your physician or another qualified healthcare 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.