By Nicholas Cirelli
I am fourteen years old and have severe hemophilia A, factor VIII <1%. This information has been drilled into my head from the day I was born. I now rattle it off much like I give my friends my cell phone number or Instagram name.
Not long ago, I was selected to be inducted into the Junior National Honor Society at my middle school. As part of this honor, I was tasked with creating a community service project. I considered some of the more typical projects, such as volunteering at a soup kitchen for homeless people or collecting items for the local animal shelter, but I decided on something that hit closer to home. I requested permission to use my community service project hours to write letters to people in the hemophilia community to share my experiences with parents of newly diagnosed children or to thank the older generation of people with hemophilia for what they went through so that I have such safe medication to control my bleeds. I decided this project would best coincide with World Hemophilia Day, April 17th.
Recently I watched the documentary called Bad Blood: A Cautionary Tale. I did not know much about the tainted blood crisis before viewing it, so many of the facts and events shown gave me a new perspective on living with hemophilia. The result of watching this film was that it made me feel sick to my stomach. The physical and emotional pain you had to go through as boys and young men is something I’ve never seen before and hopefully never see again. Watching how young men were disregarded by society for doing nothing wrong, for simply being born with hemophilia, felt evil and sickening. It made me feel angry how many were taken advantage of, lied to, and even cast out by others. After finishing the film, I sat down and thought long and hard about what past hemophiliacs had endured. Then, a new feeling began to arise in me. At first, I didn’t know what this feeling was or why I was feeling it. Then, I understood. I began to feel lucky.
My mom had this saying that came along whenever something happened to me. Whether I received a sunburn, had a bleed, fell down, or pretty much anything else, my mother would say in a cheerful tune, “It could always be worse.” As a younger child, I almost always shook my head and continued to complain about what I felt was worth complaining about. But after watching this movie, not only do I understand what Mom was trying to say, but I also understand why she was saying it. I am lucky, very lucky, and things could be worse, much worse. The younger me would think, “What could possibly be worse?”
I wish I could turn back time and tell my younger self that being a hemophiliac now seems like heaven compared to being a hemophiliac years ago.
My life is so different because of what you have gone through. I do not need to worry about whether my clotting factor is safe. I do not experience frequent bleeds and, as a result, do not have frequent hospital visits. Having hemophilia is something that rarely comes up in school or with my friends simply because everyone knows I have it, and they know I am okay. They do not treat me differently because of it. These things are royalties that many in the past were not able to experience. The sacrifices you made are remarkable and everlasting.
If there is one thing you can take away from this letter, I want you to know there are many young boys who are incredibly grateful for you. You rose and awoke a nation to an issue that had been under the surface for far too long. Because of you, I am alive and healthy today. I don’t have to wake up and wonder when my time will come because I know whenever that time is, it will never be because of my hemophilia. You are my hero, and a hero to many others.
I cannot imagine what you have gone through. Even as a hemophiliac myself, it seems foreign to me what your younger life looked like compared to mine. The scars left from this time, whether emotional or physical, will always be with you, and for that, I am truly sorry.
The battle I am fighting is still long and hard, but it is miniscule in comparison to the grand war you have endured. I wish to offer you my thanks. You have changed my life in ways I did not know were possible. If you ever feel alone, I want you to know this—there is an entire generation of boys who will live normal lives thanks to you. Every single one of them should look up to you as their own personal hero.
Thank you.
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