How my sons define freedom as young men with hemophilia
Their unique experiences have given them different perspectives
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One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems to suspend itself for a moment, and Julian and Caeleb are able to live their best lives without worrying about internal joint bleeding. They pursue their dreams without hesitation or limits and experience a sense of calmness and peace as they continue their respective journeys.
But this freedom is often short-lived, as hemophilia always intrudes. Respite gives way to an unexpected internal bleed, bringing pain, limited movement, and various complications. Both of my sons know what these episodes are like, but their experiences with freedom greatly differ.
What freedom means to Julian
Last summer, my oldest, Julian, traveled to the mountains of North Carolina to perform in a show. While he was there, he developed a problem with a tooth that needed to be removed. To handle the situation, he had to find people willing to take him to Asheville, about 50 miles from where he was performing. While searching for transportation, he struggled with soft tissue bleeding in his mouth.
He immediately called the hemophilia treatment center (HTC) in our home state of New Mexico for guidance. Luckily, Julian had packed his medications, Hemlibra (emicizumab-kxwh) and a recombinant factor replacement therapy. The dentist in Asheville spoke to a nurse at my son’s HTC here in New Mexico, and together, they devised a plan to extract his tooth. All went well, and Julian returned to his show and completed his contract.
For him, freedom is the opportunity to pursue his passion for acting. Put Julian on a stage, and he exudes unabashed joy. He understands that to participate in shows, he must take care of himself, including administering his biweekly Hemlibra injections.
What freedom means to Caeleb
Caeleb’s understanding of freedom is a little more complicated than his brother’s. He has struggled with complications related to hemophilia for most of his life and continues to experience pain and mobility issues.
I recently visited him at his dorm at the University of New Mexico in Albuquerque, and Caeleb mentioned how difficult his elementary years were due to what felt like a never-ending string of bleeding episodes. He spent a lot of time in the hospital’s special pediatric unit.
As if those episodes weren’t enough, the damage they caused left him with little to no cartilage in his right knee and ankle. When he started attending college, I was afraid he wouldn’t be able to walk between classes. But Caeleb has achieved freedom and independence by riding a bike around campus. This allows him to move around and exercise without putting unnecessary stress on his joints. He experiences joy because he feels in control of his life.
By receiving injections to minimize his pain and taking precautions to prevent discomfort, Caeleb is able to experience more freedom from his symptoms and complications.
The variations in my sons’ experiences with hemophilia and its treatment mean they now define freedom differently. Understanding what it means to each of them is an important way to respect and honor their unique journeys.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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