Nicola and her son, Will, share their journey with haemophilia. Will is a keen athlete, playing elite soccer as a teen with hopes to go professional. He explains how he works closely with his HTC to prevent bleeds and ensure his bleeding disorder has minimal impact on his sporting dreams.
Video transcript
Nicola: Hi, my name is Nicola and today I’m going to be talking to Will, my son, about his journey with haemophilia A.
Will: Starting from when I was young, I would have lots of bleeds, where I was up at the hospital many times, sometimes multiple times a week, but it’s progressively gotten better and better as all the new treatments have come out and I’ve started my prophylaxis, with my factor eight (VIII) when I’m in need of it when I have a bleed.
Nicola: So your factor eight is on demand, and you have your prophylaxis treatment regularly every two weeks.
Will: Yes that’s right.
Nicola: And so has your journey been with learning how to inject for your factor eight?
Will: I was around nine when I started treating myself with a butterfly, doing my factor eight. I did that two times a week for a while, and then when the prophylaxis came out, it helped me so much more and I instantly got reduced bleeds.
Nicola: And so what sports do you enjoy?
Will: I started playing basketball a lot when I was younger. I used to always injure my finger, always jarring it. And that was frustrating. And then, I switched towards soccer around nine years old, and I’ve played that all the way through.
I’ve had injuries, but I’ve got through them all the time, and that’s what I enjoy.
Nicola: In the last few years, how far have you come with your soccer? Are you playing in lots of teams? What do you do?
Will: I have been playing in three teams at the moment. One for my school first team. I’ve been playing under 17, and reserves for my local club.
Nicola: Well, that makes me feel amazing because when you were growing up, I was always worried about if you’re going to enjoy sport or if haemophilia was ever going to stop you or hold you back. But I knew you were always determined, and running around with Violette, your twin sister when you were young, I always knew that you’d have to have sport in your life.
Even before sport, running around as a baby, you were crazy and always bumping your head. Oh yeah, doing things that always made me wonder if you would ever be able to have sport as a part of your life.
But watching you grow with your dedication and your love of soccer to now play National Premier League has made me so proud as a mum and it’s amazing that we’ve had support from all the wonderful doctors and your physios and your haemophilia nurse supporting us all the way.
We’ve come so far and I feel like now you’re living a life that you have always dreamed of and that I always dreamed of and that dad always dreamed of you doing.
Will: It’s like, I don’t even have haemophilia. I don’t always have to be thinking about it, watching my every move. I’m allowed to just be hanging out with my mates, do whatever I want, play all the sport that I could ever imagine.
Nicola: I’m just so proud of how dedicated you are and how well you follow all the great advice from Haemophilia Treatment Centre and always have your treatment and still do your training. I think it’s amazing too that when you do have a bleed, you are so resilient and you’re patient, even when it’s really, really hard going both physically and emotionally, it’s very hard. And I see that your spirit and the way that you always, never give up is truly amazing.
Will: I always have always so much help from the haemophilia community and everyone teaching me these things along the way, just guiding me through my journey of sporting and life.
In the future I really want to continue playing my soccer and hopefully bring it to a seniors level, getting paid and possibly playing for a big club like Melbourne City. Something around that. Hopefully that will be in my near future.
Nicola: So what do you think is going to be the experience of new families and young people with haemophilia?
Will: I feel like there’s so much new treatments coming out and there’s so many different opportunities for them to take different routes. Of course, there still might be some difficult times with bleeds, but with all this treatment coming out, it’s just going to be increasingly better and better and easier for people to cope and get through it.
Nicola: And what would you say to a new parent with a boy that’s just been born?
Will: I feel like for new parents, like what you and dad did for me, just not holding me back, allowing me to pick up every opportunity that I can Nicola: And what would you say to a new parent with a boy that’s just been born? I feel like for new parents, like what you and dad did for me, just not holding me back, allowing me to pick up every opportunity that I can any differently to other people. Allow me to play my sport and do that activity or anything I want to do in life.
Nicola: And we’ve always talked about you always giving everything a try. And if anything happens, we deal with that afterwards. But for you to always push the boundaries and to still live an amazing life.
Will: Growing up, letting me do whatever I wanted to do and do what I felt like was normal, was great, it made me feel not different and not like I had to struggle through life. I always had someone there guiding me and allowing me to have fun.
Nicola: Family camps and support from community is what has always helped us through and I feel like telling people for the future and for any kids growing up that they too can be as successful and as amazing as you are.
Will: If I was to say anything to you and dad, it be thank you so much for helping me and guiding me through this whole journey. You guys have always been there for me and helped me out with all my treatments and all the bleeds I’ve been through.
Nicola: You going to make me cry … [laugh]
