My 15-year-old son, Caeleb, is looking for a summer job. We live in a small town, so his choices are limited, and many jobs require applicants to be at least 16. Part of me hopes he waits until next summer to find a job, but he is actively looking. The…

I started writing for Bionews, the publisher of Hemophilia News Today, almost three years ago. However, it recently dawned on me that I never mentioned why I named my column “In the Twinkling of an Eye.” While amazingly simple on the surface, the answer has deep layers that may…

Nearly all men with moderate-to-severe hemophilia B given the experimental gene therapy EtranaDez (etranacogene dezaparvovec) in the HOPE-B trial have stopped using prophylactic therapies, full study results show. Trial data also indicated that EtranaDez, formerly known as AMT-061, is effective in people with antibodies against the viral vector…

There are some very fortunate people who do not experience illness. They often come from families who rarely even catch the common cold. Then, there are those of us who know all too well how illness can affect a family. My mother suffered from several chronic conditions when I was…

In addition to having hemophilia B and von Willebrand disease, I also am a caregiver to my 79-year-old mother, whom I live with in Florida. Avoiding COVID-19 has been difficult for us, as she was diagnosed with a severe immune deficiency at the height of the pandemic.

Last week proved a time of celebration in the MacDonald house as my oldest son, Julian, came home to spend a few days with our family before going to Big Bend Ranch State Park for the summer. He successfully auditioned for his first paid acting gig in the show “…

I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…

“Hey, Padre!” I hear those words, and all is right with the world. These words are what my eldest son calls me. I can’t remember when he started. All I know is when I hear that small phrase my pulse slows down and I remember that I am loved, and…

Last week I traveled to Las Cruces, New Mexico, to spend a few days with my wife, Cazandra. She works as a hospice chaplain there and usually travels back to Belen, our current home, on weekends. We’ll end this busy commute schedule next month, when we both move full…

I meet a friend at noon at my home in rural northern California. We hop into my car and drive two hours north to Brookings, a coastal town just across the border in Oregon. Driving around town, I search for a quiet parking lot with good phone reception. Using a…