As time passes, I can feel both the joys and the pressures of fatherhood. My life has centered around our daughter’s needs and ensuring that she is always happy and smiling. Friends have instructed me on the importance of fatherhood. So many problems are caused by weak father figures. Often,…
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My 13-year-old son Caeleb has had five years without experiencing any bleeding episodes. He developed an inhibitor at 11 months old, which is still active. Sometimes I find it hard to believe that he has been in such a good place with his health in recent years.
When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a…
The smell of rubber. The clanging of metal plates against one another. The sight of sweaty bodies heaving, struggling. Towels slung over shoulders. Muscles popping out of the chiseled physiques of a couple who walk through the place like a king and queen (fittingly, as they are its owners). Jared…
Yesterday, I went through the pictures on my iPhone. I started with the most recent, moving backward, my heart beating faster with each swipe. By the time I had viewed two years’ worth, anxiety had me in its grasp. I felt like I couldn’t breathe, and I stopped looking…
The start of a new school year is one of my favorite times. It smells of new pencils and crayons, lunchboxes, and my favorite, spiral notebooks. It’s a season of new beginnings, and when you have a child with hemophilia, you need the adults who will be teaching them…
Dear pharmaceutical companies, I am speaking to every one of you who makes a factor replacement product for hemophilia. Thank you for developing more options and safer products for our community. Because of your research, we have products that greatly improve our lives. We…
There is no doubt that the new medicine Hemlibra (emicizumab) is a game changer in the treatment of hemophilia. Instead of multiple infusions daily, one injection could last two weeks to a month. Such incredible new ways of approaching treatment and care introduce different concerns and result in…
After over a year without a gym membership, my wife, Cza, and I are back in our lifting den. We do it for fun and, of course, fitness. I’ve had several injuries during the past few months, all of which I can associate with the lack of physical exercise…
Caregiving is hard work. When your child is chronically ill, caregiving goes beyond the expected parental duties. You have overwhelming responsibilities. There are doctor’s appointments, infusions, and treatments at home. There are hospital stays, lab work, and missed school days. Keeping up with your child’s medical condition can…
