Originally published by Hemophilia News Today, July 15, 2026
Many people believe that if a disability or struggle is not visible, it must not be real. I learned this lesson firsthand as I watched my son Caeleb live with severe hemophilia A and its lasting effects. His challenges are not always obvious to others, but they affect nearly every part of his daily life.
Caeleb, 20, has faced many serious complications, including a high-titer inhibitor, an allergy to factor VIII, several ports, and post-traumatic stress disorder. Over the years, repeated bleeding in his right knee and ankle irreversibly damaged the joints, resulting in chronic pain.
Because of the pain, Caeleb has trouble moving around. He attends the University of New Mexico and gets around campus by riding a bike. This takes pressure off his joints and gives him more freedom. I am proud that he does not let pain stop him from living his life.
If he can’t ride his bike, Caeleb feels safer and more comfortable walking with his cane. He’ll also use a wheelchair when his pain is too much.
This summer, Caeleb is working at our church and has needed his wheelchair more often. With his chair, he’s able to move around the office quickly and easily. It also helps him manage his pain, especially when his knee is swollen.
We have been at this church for only a year, so most people there do not know how serious Caeleb’s condition is. Church members have seen him walk with a limp or use a cane, which can be confusing. Some people ask me about it, since it is unusual for someone his age to need a mobility aid. It is hard to explain his past, as a short answer conveys only a small part of his story. It is difficult for those who did not see his hardest years with hemophilia to fully understand what he has gone through.
Over the years, I’ve also found that seeing a young man in a wheelchair can make people uncomfortable or even a little suspicious that he might be faking it. While I believe in educating others and advocating for my son, we shouldn’t have to explain every detail of his health to receive compassion and understanding.
It is easy to pass judgment and make assumptions based on someone’s appearance, but everyone has a story and struggles we cannot see. When we choose to see others with kindness, we become better neighbors and friends. Sometimes, the things that make us uncomfortable are what teach us empathy, kindness, compassion, and the value of every person.
