By taking control of his health, my son is able to pursue his dreams

A columnist is touched to witness his boy with hemophilia become a man

Joe MacDonald avatar

by Joe MacDonald |

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The singer onstage opened his mouth, and notes flew through the air, falling on the ears of everyone listening. His tone indicated a beautifully powerful lyric tenor voice as the song filled the space, hypnotizing the crowd. As he finished his first number, the crowd roared with joy. He stood center stage, accepting every ounce of affirmation offered by a generous audience.

I couldn’t help but notice how gracefully the singer moved to each song, often making light banter to entertain the crowd. As I continued to watch the fantastic scene, something hit me right between the eyes. The singer was my oldest son, Julian, who performed like a snake charmer, captivating all of us under his spell. I didn’t see my son; I saw a grown man taking control of his life as he shared his talents with a grateful group of people.

I remained poised and in control until Julian sang his last number, “Somewhere Over the Rainbow.” He took me back to when I was his age and sang the same song. Tears began to flow as he crafted each phrase of the familiar piece with careful determination and beautiful style. His interpretation proved breathtaking as the audience gave my incredible son a standing ovation.

Many of my friends came to me and saw the tears in my eyes. They joined and celebrated a moment of joy with me, a blubbering old man whose musical soul had experienced something special. They all agreed that the remarkable man they’d heard had the power to move people with his voice. Julian sang with the best sound he could offer, and the crowd responded by affirming his golden voice.

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Julian’s journey toward wholeness

As I reflected on the evening, I realized that I hadn’t seen the boy who struggled with a bleeding disorder or the awkward teenager who infused himself so he could participate in choir and band. Hemophilia had no place on this particular evening. Before his performance, Julian took care to treat himself prophylactically by injecting Hemlibra (emicizumab-kxwh). By caring for his medical needs in advance, he could concentrate on the most important thing: making music.

I’d witnessed the transformation of a boy into a man. Julian is taking control of his life and offering beauty to a world that needs it. His gift displays the passion that continues to drive him, encouraging him to continue striving to achieve his dream of being a successfully employed actor and singer.

He knows that he must treat his hemophilia so that he may continue to work toward his goals. With attention to injecting regularly, Julian can maintain his dream of singing on Broadway. He knows his success depends on compliance with his medical road map and caring for his joints to prevent breakthrough bleeding.

This young man shows a maturity I never saw in the boy who loved music. I could tell that Julian had discovered his power to maneuver his talent in the direction of his choice. He also maintains complete control of his bleeding disorder. He knows that each part must balance the other for him to continue his journey toward wholeness.

The singer returned to the stage, and as he tried to silence the crowd, he said, “Thank you, everyone, for sharing this night with me. You won me over, so everyone sit down, and I will sing another song. This one is extraordinary, and I would like to dedicate it to my parents. Without their support, I don’t know what I would do.”

Before he started to sing, I looked at my wife, Cazandra; like me, she had tears falling down her cheeks. All we ever wanted was for our son to be happy. We knew that Julian stood right in the middle of the joy found deep within his soul. What could be better than that?

As the music came to an end, the singer took a bow and thanked his audience. He left the stage and immediately shook hands with people who’d come to see the show. When everyone had left, he turned to his parents and said, “Thank you most for letting me pursue my dreams. You are amazing.” That phrase of sacred love still sings in my ears.

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.


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