Columns

Last in a series. Read parts one and two. In the final installment of my three-part interview with Chip Hailey, 75, we explore what his life looks like after gene therapy. Chip shares how Hemgenix (etranacogene dezaparvovec) has transformed his daily routine, his mindset, and his outlook…

My wife, Cazandra, and I had a brief discussion as we continued packing what seemed like a million boxes for our move from Rio Communities, which is near Albuquerque, New Mexico, to Las Cruces, about 200 miles south. Between the phrases “That goes there” and “Put that box in that…

Laughable. That’s how Heidi Bentz and Lucrecia E. Choto, two women who struggled for years to receive a proper diagnosis of von Willebrand disease (VWD), described the results of a 2004 survey by the U.S. Centers for Disease Control and Prevention (CDC) of 75 women who…

My husband, Jared, lives with hemophilia B and a seizure disorder. He also lifts weights, performs bodyweight workouts, and swims. Now and then, someone will see him doing laps in the pool and ask, “Are you a professional?” To which he responds, “No, the water just loves me more.

My family gathered to take pictures. We drove to the Bosque, the cottonwood forest that borders the Rio Grande and runs through New Mexico. It’s a beautiful place with running water and trees. The photographer took numerous action shots, one of which brought a reality check. The photographer had us…

Second in a series. Read part one. In part one of my interview with Chip Hailey, a 75-year-old from Tennessee, we explored what led him to pursue gene therapy for hemophilia B, his lifelong journey with the condition, his hopes for a new chapter, and the road to…

Many of my recent columns have focused on my youngest son, Caeleb, and his transition into adulthood. I’ve shared how we’ve empowered him to live his best life, including lessons on taking responsibility for himself as he navigates the world. He must take the baton that we’ve handed him. We…

While riding a bus at the first hemophilia conference I attended, I met a young man who had mild hemophilia, just like me. Unlike me, he’d been diagnosed close to birth. Then he shared his factor VIII levels; shockingly, they were higher than mine. I sat in disbelief. I’d…

When my husband, Jared, was growing up, people in his community didn’t always speak kindly about mobility aids. Crutches, wheelchairs, and canes were often seen as signs of helplessness, things you turned to only when you’d run out of options. That perception stayed with him well into adulthood. He did…

First in a series. Have you ever wondered what it’s really like to receive gene therapy? I know I have. So when I had the chance to interview 75-year-old Chip Hailey of Tennessee — one of the participants in a clinical trial for Hemgenix (etranacogene dezaparvovec), the first…