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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…
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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…
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…
In two months, my oldest son turns 25. After the initial shock that he is reaching a milestone birthday, I realized that next year proves crucial in terms of insurance. I currently cover him with my benefits package, but starting at 26, he must provide coverage for himself. He…
As a caregiver, hope exists in practically my every waking thought. I wish for things to improve regarding my loved ones’ treatment. Hope keeps me going so that I may provide the best care possible for them. Four simple letters put together in the proper order set my heart and…
This time of year reminds me of hope and the promise of new beginnings. In the spring of 2014, when my son “MacDonald the Younger” was 8, his life drastically changed. Along with our talented hematologist, Dr. Winter, we mapped a treatment plan that proved successful for my young, stinky…
I cannot believe that Easter is a few days away. I keep asking myself, “Didn’t we celebrate New Year’s Day yesterday?” One of the common themes interwoven into the fabric of what Christians call Holy Week is the idea that before we get to the joy of Easter, we…
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