In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their lives with five questions. Here, we talk to Seth Rojhani, a 21-year-old student at the University of Central Florida (UCF) who, in spite of his severe hemophilia A, plays for the Orlando Magic Wheels, a wheelchair basketball team.
Why do you need a wheelchair to get around?
I had cancer—neuroblastoma—when I was 6 months old. I beat that, but it came back again when I was 11 months old. When I had surgery to excise the tumor, my spinal cord was severed. So this has always been how I am; I’ve never known anything different.
Tell me about your involvement with wheelchair basketball.
I just wanted to play basketball. When I lived in Denver, they had a wheelchair league for kids that I played in. When my family moved to Florida, I first played for the Miami Heat Wheels, and when I moved up to Orlando I found the Magic Wheels. I’ve been playing with them for three years. We’re doing pretty well, but there are some tough teams out there. It’s part of the NWBA, which is the National Wheelchair Basketball Association.
Do you play any other wheelchair sports?
I used to play ice hockey when I lived in Denver, but I can’t find a team here in Florida because they don’t seem to know what ice is. It’s sled hockey, so there’s a sled that you sit down in, and your legs are straight out in front of you. And you have two sticks with teeth on one end so you can propel yourself, and on the other end is the actual hockey blade. It’s a very tiring sport.
How do you ensure that you play these sports safely?
I have severe hemophilia A, so I make sure I infuse before each game. I also did notify the doctors at my HTC that this was something I was going to be doing. And I train on my own. At UCF there’s a program where kids who have disabilities can work out under the supervision of physical therapy students who are getting their doctorate. I work out with them twice a week.
How else are you involved with wheelchair sports?
I work for the UCF’s Recreation and Wellness center—the gym. Right now, there’s no program for kids with disabilities, so I’m working to create an adaptive sports program. We want to encourage different sports: wheelchair basketball, swimming, rock climbing, goalball, which is a sport for people who are visually impaired. Really, anything that people on campus are interested in. It’s in the beginning stages right now, but we’re making good progress.
Do you know an interesting individual we should profile in a future issue of HemAware? E-mail Managing Editor January W. Payne.