People think it’s a disadvantage to have a chronic disorder; I believe the opposite. Growing up with hemophilia made me stronger emotionally, mentally and psychologically. It allowed me to develop mental toughness, discipline and self-awareness. Throughout my life, I have used the physical and mental adversities I’ve lived through to continue to learn and grow.
At the age of one and a half, I was diagnosed with moderate hemophilia A. There was no history of hemophilia in my family, so my parents were shocked and devastated when they heard the news. But after learning more about hemophilia, my mom understood there were new treatments that would allow me to live a relatively normal life style. I didn’t make it easy because I was a hyperactive child; I was always on the move, running, jumping and climbing. With my mom, I wore a helmet and was never left unsupervised. My father, on the other hand, did not understand hemophilia, and he wanted me to have a “normal” childhood. I would ride my bike, play tag, he even allowed me to play the sport I loved, soccer. I played goalkeeper for a few years. I sprained my right ankle so many times that by the time I was 12, I had moderate joint damage. I would infuse before every game, but I would never let my ankle heal properly. By the time I got to high school I had arthritis in my right ankle. I hated hemophilia during these years.
My teenage years were rough. My dad was an abusive alcoholic that beat me and my mom. As a result, I looked to be away from home. Then, I got involved with gangs. I got arrested for the first time at the age of 17 and went to juvenile hall. Four months later, my father was sentenced to 15 years in prison. A year after that, my daughter, who changed the way I perceived life, was born with mild hemophilia A. Despite all these challenges, I still managed to graduate from high school, and met the love of my life. I went to school, worked and raised a family of 4, all by the age of 20.
At the age of 22, I was given a great chance for me to turn my life around with an opportunity to work in a doctor's office. . The doctor was an ophthalmologist by the name of Dr Lydia Matkovich, who believed in me and gave me a chance to take a different route in life. She became my mentor and immediately made a huge impact in my life. I learned to be more reliable, responsible, to pay attention to detail and just flat out be a more productive human being in every aspect of my life. By the age of 25 I was committed to working on myself and reaching my potential. I took a home study course and got certified as an ophthalmic technician. I joined my local church to work on my moral compass and served in the youth and couples ministry. I started exercising, eating better and became responsible about my prophylaxis treatment. I joined Toastmasters to work on my public speaking and leadership skills. I started my own business in finance. These changes resulted in a breakthrough in my life. I couldn’t have done this without the support of the 4 strongest, most important women in my life: Dr Matkovich, my daughter, my mother and my wife. They helped me understand that I have the ambition and ability to set and achieve goals in my life.
Things have also changed a lot in my relationship with my bleeding disorder. Where once I hated my hemophilia, now I'm a patient advocate for my hemophilia community. My brothers with hemophilia and I started a cycling club. I've become very active by developing local community groups for people with bleeding disorders. These community groups are focused on specific ages and genders. I was able to develop young leaders to manage and coordinate the young men's group, the teen girl's group and the father's group. These groups allow the community to share their experiences and concerns while bonding and building relationships. I participated in the Young Adult Advocacy Summit and the TEACH Immersion program by HFA in 2018. As a result, I had the opportunity to travel to Washington DC to advocate for my community on Capitol Hill, which was one of the most amazing experiences I’ve ever had.
My passion to help my community is growing all the time. My mission is now to help my community at a national level. I got the opportunity to travel across the country for speaking engagements about life with hemophilia. I'm looking forward to going back to school and getting my degree in business to one day have financial independence. If I am financially free I can spend more time giving back to the community and making a difference in the world. This will bring me ultimate fulfilment in my life.