I am a pastor and a parent of two sons with hemophilia, a rare, genetic bleeding disorder that occurs in about one in 5,000 male births. My youngest son has a high-titer inhibitor, which means his immune system has developed antibodies to factor replacement. He’s also had an allergic reaction…

My youngest son, Caeleb, is a sophomore in high school. Being with his marching band “people” makes him very happy. Caeleb plays the trumpet, but he also plays the synthesizer in the percussion pit (which performs from the sideline) during marching season. I am grateful for the band director’s…

Last week, my husband, Jared, tested positive for COVID-19. He had been experiencing a tickle in his throat for the last couple days but didn’t have other symptoms. Then he woke up with a persistent cough and decided to get tested. As we were driving to…

Ten U.K. families who are members of the Haemophilia Society have the chance to enjoy a free, virtual Camp in the Cloud experience offered by Over The Wall, a nonprofit specializing in activity camps for children living with serious disorders. The places, each worth £150 (about $206), are available on a first-come,…

I recently took a second freelance job to help move my family forward despite the challenges of the pandemic. I’ve only been at it for two weeks, but so far it’s been good. I’m praying for a good working relationship with my boss, and for my own personal growth in…

Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event aimed at celebrating the community and underscoring the need for treatment for all. Unite Day complements participation in the annual Unite for Bleeding Disorders Walk, both presented by the…

Many times, when I look back at how I handled my sons’ hemophilia care, I quickly remember the poor choices I made. I ache over decisions that caused heartache, and allow them to capture my full attention. Too often, I fixate on how one decision affected life choices, often leading…

To ensure the health and safety of participants given the ongoing COVID-19 pandemic, this years’ Bleeding Disorders Conference (BDC) will be held virtually Aug. 26–29. An additional day of pre-conference workshops is slated for Aug. 25. While the conference was meant to take place in Denver, Colorado, its…

During the month of August, my husband, Jared, and I are happily celebrating our third year of marriage. Though the past few months have been rocky on account of the pandemic and some aspects of our family life that appear out of our control, we remain happy and grateful to…

When I was younger, I drew up several vision boards outlining my dream life. I simply listed my goals and the age by which I wanted to achieve them. I remember being 10 years old and writing in my diary with such strong conviction that I needed to own…