I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is…

Last year was difficult for my mighty warrior Caeleb. Moving to a new school in a town where everyone knows everyone is not something you wish for as an incoming seventh-grader. This year was better until I discovered that a couple of boys were bullying Caeleb and he did not…

Two new gene therapy vectors designed for liver diseases show promising effects in a mouse model of hemophilia B, according to a recent study. The study, “Adeno-associated virus serotype 2 capsid variants for improved liver-directed gene therapy,” was published in Hepatology. Hemophilia B is caused…

I do not give up. It’s in my DNA to find answers to questions, even if it takes a long time. I hope my sons, who both have hemophilia, inherit this characteristic of seeking out answers. I pray they have the strength to never accept defeat. I tell them…

My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart,…

A dreary day is unusual in the desert of New Mexico, where we live. When it happens, the sky opens, releasing a much-needed downpour of liquid gold. The dry ground is soaking up this scarce commodity. It’s a bad hair day for many who aren’t used to double-digit humidity, and…

The holiday season means different things for different people. Wrapping presents, taking a family vacation, or simply baking cookies are some of the activities that bring people happiness during this time. Regardless of a person’s faith, tradition, or experience, the holidays are meant to bring joy, love, hope, and…

I often put myself in uncomfortable situations, especially when the health and well-being of my sons are at risk. There was a time when my youngest son, Caeleb, 17, was in the hospital more than he was at home. During those years, dealing with his hemophilia and inhibitor became…

I’m a hospice chaplain, and one day I was at the nurses’ station, completing my notes from a patient visit, when the fire alarm sounded. Startled, I turned to the nurse, who said the alarm had been going off all day due to a system glitch. The piercing, unrelenting sound…

The first gene therapy for adults with hemophilia B — branded as Hemgenix (etranacogene dezaparvovec) — has been approved by the U.S. Food and Drug Administration (FDA). Meant to be a one-time treatment, Hemgenix is expected to keep bleeding in check in the long term, while also allowing patients…