My youngest son was frequently hospitalized due to bleeding episodes brought on by hemophilia, and it often left me feeling trapped and stressed. I brought work projects with me, but the constant interruptions left me feeling powerless and unable to focus. My anxiety often soared. Caeleb picked up on my…
In the Twinkling of an Eye - a Column by Joe MacDonald
When my oldest son, Julian, was 6, he started a ritual whenever I traveled away from home: He selected a small stuffed animal from his collection and placed it in my suitcase. When I asked why he had given me the toy, he responded, “Because I don’t want you…
Last in a series. Read part one. Last week, I asked my oldest son, Julian, what he wished people outside the bleeding disorders community understood about hemophilia. He wished they would not treat him as though he lived in a protective bubble. He wanted independence and trust…
First in a series. This morning, my oldest son, Julian, 30, called me from Philadelphia, where he is living for two months before packing up his bags and moving again. He is a professional entertainer hoping to sing on Broadway one day. Currently, he’s on his first national tour for…
If I could go back in time, I would learn to control my anger sooner. I didn’t say unkind things or become physical, but my voice did get loud enough to frighten my children. After I regained my senses, I would punish myself for the panic I saw in…
Many years ago, my family attended the National Bleeding Disorders Foundation’s Bleeding Disorders Conference. My youngest son, Caeleb, was 8 at the time. Due to his hemophilia, he experienced numerous internal bleeding episodes as a child, making it impossible for him to walk long distances. We brought a wheelchair…
My son Caeleb has hemophilia, and when he was in high school, he dealt with a lot of chronic pain, the result of continuous bleeding episodes into his right knee and ankle. He missed many days of school because the pain was so great that he couldn’t focus. I…
Note: This column describes the author’s and his sons’ experiences with Hemlibra (emicizumab-KXWH). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. The dog days of summer can lull you into a false sense of security. There’s not much going on,…
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…
Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe.
