My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves…

The unimaginable has happened. My youngest son, Caeleb, had his port removed. Of course, when someone with a bleeding disorder has a port, it’s usually not forever, so why is it a big deal for my 13-year-old son? This was his seventh port. He has had…

So, we are in the car. Everyone is in their respective seats. We are all looking forward to our vacation. The car is filled with suitcases and excitement. Then, I hear the dreaded sentence from my youngest boy: “Daddy, my leg hurts.” My wife and I look at…

“I’m so sorry. What can I do? I am here if you need me.” When we hear bad news about someone we love, most of us struggle to find the right words to comfort the one hurting. Sometimes, the best words are no words at all. It just…

Baby Cittie turned a month old on Feb. 18. I’ve noticed that her leg has sported a largish gray spot resembling a bruise since birth. Although it has faded, it still hasn’t gone away entirely. As a first-time mom, I am naturally paranoid. I notice…

Scientists successfully combined the gene-editing tool CRISPR-Cas9 and a special type of virus to deliver corrected genes to restore the function of the coagulation factor IX (FIX) gene in young mice with hemophilia B. The study, “Long-term correction of hemophilia B using adenoviral delivery of CRISPR/Cas9,”…

In past columns, I discussed my frustrations when anger rears its ugly head out of the shadows of my consciousness and takes hold of me. It isn’t pretty, nor is it the best choice to make. I wasn’t prepared to handle the overwhelming emotions that came over…

In my home these days, hemophilia is like a family member who stops by for a fleeting visit — just long enough to say hello and give a quick hug, but not long enough for a cup of coffee. I hadn’t dared to dream that this situation would…

This week, we will consult with the surgeon who will have placed and removed six of my son’s seven port-a-caths. There will not be an eighth foreign object in “MacDonald the Younger’s” body, as it will not see port number eight. His treatment does not require access, and…

When you become a parent, your world instantly changes. Your life focus becomes the child that you have brought into the world. When your child has a chronic condition, the game changes dramatically. Not only are you concerned about the regular milestones that your child may or may…