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…
In the Twinkling of an Eye - a Column by Joe MacDonald
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.
My youngest son, Caeleb, is working this summer as an office intern at St. Paul’s United Methodist Church in Las Cruces, New Mexico, where I serve as pastor. Even though I am his father, “MacDonald the Younger” does not report to me. He reports to the business manager. That boundary…
My sons, Julian and Caeleb, were both diagnosed with hemophilia as babies. Although they’re 10 years apart, each diagnosis was overwhelming and affected my wife, Cazandra, and me differently. I remember feeling helpless, not knowing anyone who had the slightest idea how to manage a bleeding disorder. For the…
I woke up on Saturday morning and struggled to stand upright. My back had given out, and I could hardly take a step forward. Sunday morning was no better, but I had to prepare for worship, so I was determined to get dressed, get to church, and fulfill my duties…
My son Julian posted a picture on Facebook this week that took my breath away. I had to look at it twice to make sure it was really him. In the photo, he was sitting on large rocks on the shore, water swirling around his feet, his hands open as…
When my sons were small, I didn’t give speaking up on their behalf a second thought. As toddlers, they had little interest in sitting through difficult explanations about their bodies and about hemophilia. They wanted to be free to play with toys and their friends. When internal bleeds…
