While the holiday season brings excitement, it also creates unique challenges for families like ours who are managing chronic conditions. My husband, Jared, has severe hemophilia B and epilepsy, and I have attention-deficit/hyperactivity disorder (ADHD). While common advice suggests taking it slow, setting strict boundaries, and skipping some…
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On Nov. 19, I had the privilege of participating in a panel at the Plasma Protein Therapeutics Association’s Plasma Protein Forum in Washington, D.C. Robert F. Sidonio Jr., MD, a pediatric hematologist-oncologist, joined Nikole Scappe-Hagen, the National Bleeding Disorders Foundation’s manager of education, and I to lead…
One thing I noticed during my son Caeleb’s frequent hospitalizations was the need for his mother, Cazandra, and I to circle the wagons to protect him and his brother, Julian. We gave friends and family updates and quick calls, but during many holidays that we celebrated in the hospital,…
The Coalition for Hemophilia B held its annual women’s retreat Nov. 14-17 in Alpharetta, Georgia. Initially scheduled for September, the event was postponed due to Hurricane Helene. Despite the delay, the retreat was worth the wait, and I was honored to attend. Since September, I have proudly served as…
My wife, Cazandra, had complicated surgery last week that required her to spend some time in the hospital, followed by at least two weeks of inpatient rehabilitation. We were in shock, as we’d thought she would spend three days in a health facility and then finish her…
My sons have severe hemophilia A and are 10 years apart. Such a considerable age difference once posed challenges, especially when they were younger. Back then, my oldest son, Julian, felt he and his brother, Caeleb, didn’t have common interests. I reminded Julian that siblings close in age…
I cannot tell you how many times I’ve heard the term “Bubble Wrap.” A child with hemophilia is born: “How am I going to keep this kid Bubble Wrapped and safe?” A kid with hemophilia falls on the playground and bleeds: “I wish we could Bubble Wrap you…
After a decade of living alongside my husband, Jared, and his severe hemophilia B, I’ve learned that not all bleeding is as straightforward as it may seem. Bleeds vary widely, not just in size but in severity and impact. What might look minor can be excruciating, while larger bleeds,…
I can still feel the sting of frustration as I replay that night at the recent National Conference for Women and Teens with hemophilia in Detroit. The conference was a place of empowerment — a chance to connect, learn, and share experiences with others who live with hemophilia…
My oldest son, Julian, recently approached me and asked, “Dad, can you play this song for me on the piano? I have to post a singing audition tonight.” Panic filled my body. I responded, “Oh, Julian, this song has too many fast chord changes.” He walked away, trying to find…
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