My mother passed away a month ago. I thought I’d be ready after six years of dealing with her condition. I was wrong. In 2012, doctors diagnosed her with diffuse large B-cell lymphoma (a blood cancer). She went into remission, but four years later, the cancer returned, this time…

I attended the Hope for Hemophilia conference last weekend and met some wonderful people. I delivered a keynote address and shared my story of raising sons with hemophilia and holding on to hope. It was a special experience and I am grateful for the opportunity. The day after…

My youngest son, Caeleb, and I recently saw an outstanding production of the musical “Hamilton.” As we watched the performers onstage, I glanced at my son and saw his face glued to the action. He appeared entranced by the dancers and singers moving across the stage with catlike precision.

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,…