When talking about her two children, my mom always tells the same stories. She had to hide food from me as a toddler or I would literally eat everything in sight (even a whole banana, including the peel). But my brother Eric had a more trying childhood than just eating an unpeeled banana. My mom says in almost every family portrait we took over the years, Eric wore either a cast or an arm sling, or was in a wheel chair. And for many years, my mom described Eric to others as being a very active child who always seemed to be getting hurt. She had no idea he was a hemophiliac.
One of Eric’s worst injuries happened when he was twelve and was riding bikes with a couple other boys. When they suddenly turned to avoid an upcoming wall, they fell—on top of Eric. He dislocated his shoulder and spent many months in agonizing pain because it just wouldn’t heal.
Living in São Paulo, Brazil was not easy—much less when my mother had to take my brother up and down the city in multiple hour-long bus rides in order to find a doctor who could help him. Finally a doctor (whom my mom today considers her hero) brought up the question of a problem in Eric’s blood. Eric began having it tested for possible problems with coagulation. And though he was tested for different factors, none came back positive. Before the testing was complete—and before Eric was tested for factor IX deficiency—he got better and my mom decided to stop the expensive tests. Eric, however, kept getting hurt and taking twice as long to heal, but the blood concern was never brought up again.
When Eric was fifteen, and one year after our family moved to the U.S., he tore the meniscus in his right knee joint while playing soccer. I was only seven, but I perfectly remember coming home from school and seeing Eric on the couch with his leg elevated and an ice pack on his knee, completely oblivious to the drama that was about to follow. After the second surgery, Eric’s knee would not stop bleeding and therefore wouldn’t heal. No one knew what was happening. Eventually, my mom remembered the blood tests Eric had begun in Brazil years earlier, and she mentioned them to the doctors. Not long after, Eric was diagnosed with moderate hemophilia, factor IX deficiency, and two more surgeries followed. There was so much damage to his knee after the fourth surgery that the doctor told Eric—the kid who had dreams of playing in the NBA—he would always walk with a limp and a cane and wouldn’t be able to bend or stretch his knee completely.
When people speak of heroes, I always think of my brother—not that I would ever admit it to him, because I would never hear the end of it. But it’s true and although I was pretty young when all of this happened, it wasn’t something I could easily forget. After Eric’s last surgery, for three months he went through intensive physical therapy: eight hours a day and seven days a week of excruciating pain. And, miraculously, by the end of it he was able to bend his right and damaged knee better than his left. Even though Eric had an unprecedented recovery, he was still very much in denial of his condition. As far as we know, hemophilia does not run in our family; there is no history or signs of it, so it took Eric a couple of years to finally own up to his condition. I may not be the one who went through all of that, but I admired how my older brother never gave up or let his condition stop him from living his life to the fullest. He continued playing sports and was on his high school’s volleyball team, but he always kept his factor medication and crutches close by.
Although I may not be physically affected by hemophilia, my life has changed because of it. When I was fourteen I received a letter from the Utah Hemophilia Foundation (UHF) inviting me to go to Camp Valor as a Counselor-in-Training (I’m so old school, we were still called CITs back then). My parents dropped me off at the beginning of CIT training into a community in which I had no previous contact with. I knew absolutely no one. Now I look forward each summer to the opportunity I have to go to camp and be surrounded by this amazing community that helped my brother when he most needed it—and welcomed me with open arms.
This past year was my first time volunteering at camp as an official counselor. I expected it to be a good experience, but not as great as essentially being a “big camper.” Boy was I wrong. Seeing the kids through the different lens of being a counselor gave me so much more perspective and appreciation. I’m honored to have been able to work with them—who are all in some way affected by a bleeding disorder, just as I have been. I’ve seen the ups and I’ve seen the downs, and it’s all given me a better perspective on life. It’s shown me how we all have difficulties, whether they’re physical or not, and no one goes through this life unaffected or unaltered by those experiences. It’s what we do with them that shapes who we are and who we will become.
This reminds me of the classic example of young Bruce Wayne who witnessed the murder of his parents, and instead of letting that traumatic event turn him into a bad guy, he decided to use it for good by becoming Batman. It’s the difficult experiences and trials that allow us to see the good, and I know that I’ve personally learned a lot as a sibling, and can only imagine that my brother has learned much more as a hemophiliac. I’m grateful for my parents and their perseverance and dedication and to the UHF community and everything they have done for us. And I’m especially grateful for the example that my brother is to me by showing that if he can defy the odds, so can I.
