My older son came to visit us for the first time since March 2020. Although we talk almost every day, there is nothing like seeing him in person. I didn’t realize how much my soul craved communion with him. We laughed and talked about how good it is to have…
In the Twinkling of an Eye - a Column by Joe MacDonald
Last Sunday, I preached a sermon about the Old Testament story of David slaying the giant Goliath. David was young and much shorter than the very tall Goliath. The odds were against David, yet through divine intervention, he did the unthinkable and took Goliath’s life with one stone. His…
In past columns, I wrote about the benefits of creating a medical road map to keep everyone involved in my son’s hemophilia care on the same page. This collegial approach included data from medical, educational, and personal perspectives, allowing us to form a rich assessment of my stinky boy’s…
My youngest son suffered his last joint bleed from hemophilia over seven years ago. Gone are the days when he could not walk, and a wheelchair was the most accessible way for him to get around at school and family outings. I work at a church that knows my…
This summer brings a tinge of melancholy as the Sangre de Oro Chapter of the National Hemophilia Foundation has announced that its usual weeklong summer camp will not meet in person. While I understand the reason for avoiding unnecessary health risks, I still feel sad for the regular…
Recently, I preached a sermon that focused on advocacy. The basis of the message came from the Gospel of Mark 6:53-56. In the Scripture passage, people carried their friends and loved ones on mats to Jesus’ feet so that those who suffered from illnesses could touch his garment and…
I learned how to be a caregiver from my mother. Ruby Jane loved my children with complete devotion. While I made her a grandmother, she made me the man I am today. I observed her care for not only family but humanity. She spent years serving as the…
Hemlibra (emicizumab-kxwh) has been a wonder medicine for many hemophilia patients, including my youngest son. Among the benefits that he receives is a respite from internal bleeds. He now infuses every other week instead of every day. We no longer focus on numbers regarding inhibitor levels, but pray…
When I was young, I learned how to be a caregiver for my grandfather. My mother, sister, and I lived with my grandparents for longer than I can remember. I had an incredibly unique relationship with my mother’s parents, particularly my grandfather. When I was about 13, he had a…
The last time my youngest son spent the night in a hospital due to a breakthrough bleeding episode was in February 2014. As years passed, his health continued to improve, and life returned to normal. The only difference between my son and the boy next door was the…
Recent Posts
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness