February 2014 proved to host the last bleed “MacDonald the Younger” faced thus far. The treatment plan created by our Hemophilia Treatment Center worked like a charm, and in the twinkling of an eye, the storm subsided and our quality of life improved drastically. What we didn’t…

I’ve spent several nights in the hospital with my son, and I play tag with my wife. It is her turn to trade duties with me. I leave the medical center and head straight to the church, lead worship, eat a meal, and return to the hospital to…

In recent years, I’ve found myself simplifying my diagnosis in medical settings by saying I have a bleeding disorder. It’s the simplest way to explain what is actually a combination of hemophilia B and von Willebrand disease. It’s broad enough to be understood, and…

In a reversal of a previous recommendation, the U.K.’s National Institute for Health and Care Excellence (NICE) has recommended that the National Health Service (NHS), England’s publicly funded health insurance program, should offer reimbursement for Hemgenix (etranacogene dezaparvovec) to eligible adults with hemophilia B. Reimbursement would come through…

My daughter’s nanny left last week for a two-week vacation to her hometown. Since then, my husband, Jared, and I have been getting by without an extra pair of hands to help with chores and childcare. So far, it’s been a tiring, albeit interesting, journey. Ever since we became a…

I am in a season of trying to pace myself. Instead of running at the track, I am walking. Instead of lifting heavy things, I ask for help. I am also finding time to rest. These are not things that come naturally to me. I always have several projects in…

“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…

My 16-year-old son, Caeleb, is on summer break. He told me that summer is a little too boring and the school year is a little too much. He is definitely a teenager. Next month he begins summer band, and boredom will become exhaustion. Caeleb is already concerned about marching…

We live in a world that is loud and overwhelms us at every turn. The noise can drown out our own ability to think, leaving us frightened and unsure what our next step should be. Because I have been a caregiver to two sons with hemophilia and have to deal…

My son Caeleb participated in a marching band competition this past Saturday. He plays the keyboard in the pit so that he doesn’t have to move around on the field, which would cause intense pain. Many years of internal bleeding left no cartilage in my son’s damaged right…