TEEN: Nothing is Stopping Nick!
BY ALICIA COOK
Nick, almost 16, is currently taking driver’s ed courses and cannot wait to get behind the wheel. Born and raised in Maryland, about 30 minutes outside Baltimore, Nick is a self-proclaimed “typical teenager.” He loves video games, soccer, the Dallas Cowboys, Cartoon Network, Lego Modular Buildings, and golf.
“I enjoy a lot of things. My favorite sport is football. I am going to see the Cowboys play in New York next month! I am not able to play football due to my hemophilia B. I love golf and I am on the high school golf team! The season just recently ended. Actually, The Coalition for Hemophilia B gifted me clubs and lessons. So, I have them to thank for that!”
Nick might not be the standard “typical” teen, but he says he doesn’t allow hemophilia to take over his entire identity. “I bring up hemophilia if it comes up. I usually don’t lead with that. I don’t want my identity to be hemophilia. I want to be myself, with hemophilia.”
One time Nick recalls having to bring up his hemophilia was when he was in fourth grade and he hit his head against the hard floor of the gym, while the class was doing sit ups. He knew he had to explain his condition to the school nurse, because even at a young age, Nick knew he needed special care when it came to certain injuries.
“I knew even back then that the nurse had little understanding of hemophilia B. The nurse just gave me an icepack and sent me back to class.”
He was in pain, he knew he needed more help, but being a child, he pushed through the pain and made it to the end of the school day. “I went to the couch at home, sat in complete darkness, until my mom came home and immediately took me to the hospital.” Nick’s head injury turned out to be a concussion and he needed factor. Nick, thinking back to that moment says, “A lot of people, even school nurses, don’t know what it means for a student to have hemophilia B. I wish more people would know about this.”
As it turns out, he is not your average teen with hemophilia either! One thing that sets him apart is that he has a really rare form of hemophilia B. He was born with severe hemophilia B, but his factor level has risen over the years, and now he lives with mild hemophilia B. Nick says that the severity level of hemophilia declining is quite rare, and he doesn’t take that for granted.
“Maybe one day I will have the opportunity to do some things in life I couldn’t do earlier in my life,” he says, hopefully. In fact, he has already experienced this with football.
“A couple of years ago, I couldn’t play any form of football, but now I can play flag football!”
In his family, his mother is a carrier and his mother’s brother (his uncle) died at three-weeks-old many years ago due to hemophilia complications and little being known about the condition at that time. He was introduced to The Coalition for Hemophilia B through his mother, who is active within the hemophilia community. Nick’s favorite event the Coalition runs is its annual Symposium in Orlando.
“I really like attending the symposiums. I love interacting with the community in person, it’s so special,” he says, pointing out that he is even more excited to regroup in person with the community after the pandemic moved everything to a virtual setting.
Nick is the youngest sibling in his family, with three older sisters. His entire family is very close and loves taking trips together. One of his sisters has Williams syndrome, a developmental disorder that affects many parts of the body. This condition is characterized by mild to moderate intellectual disability or learning problems. He says that he relates to her a lot in the sense of sometimes there are limitations on what they can both do. Nick’s overall outlook on life is quite positive and upbeat, on days he finds himself down, he reminds himself that there is a whole community behind him.
“Sometimes I see my friends doing things that I know I can’t. That general feeling of being held back from something I would love to do can be disappointing. But I realize I am not alone here. Other people feel this way and I connect with them, and we can all do things together.” He adds, “The community is always there. If you are ever feeling bummed, there are always people out there – any time, any day. People all over the USA and world!”
Nick takes great pride in how well he has performed academically throughout his schooling so far (he hopes to join the Honor Society soon!) and has big plans for his future. His ultimate goal is to become a lawyer. He has no plans on letting hemophilia B stand in his way. Nick’s advice to other teens with hemophilia B is straight to the point. “Keep your head up! Don’t let hemophilia take over your life. Be yourself. You are in control yourself, don’t let hemophilia B control you.”