Nicola’s story
Nicola is a community member from Victoria, Australia.
Dr Chris Barnes
Haemophilia Treatment Centre Director
The Royal Children’s Hospital, Melbourne
Nicola’s story beautifully captures the courage and resilience of families living with haemophilia. With the remarkable advances in treatment and care including non-factor therapies, children today can grow up chasing their dreams – whether that’s on the sports field, in the classroom, or beyond.
Just as important is the support of HFV (Haemophilia Foundation Victoria) and HFA (Haemophilia Foundation Australia) which brings families together, provides guidance, and reminds us all that no one has to face the journey of having a bleeding disorder alone.
Stories like Will’s show us that with the right care, encouragement, and community, children with bleeding disorders can truly thrive and live life to the fullest.
My name is Nicola. I am William’s mum. William has moderate haemophilia A. From the very beginning Will was a happy, busy and energetic boy; always keeping his twin sister on her toes. Will and his sister grew up together, running everywhere from the moment they could walk.
Will had many bleeds in his early life: trampoline incidents, constantly running into something and hitting his head. We spent a lot of time at the children’s hospital. Times were tough. I often wondered what his life would turn out to be. The more he grew up, the more he wanted to play sport, run around with his friends and be a complete dare devil! He never held back from rough play and, later, from giving his all on the soccer field.
Will always had so much energy, so we knew early on that he would need sport in his life. He always had a passion for it. He started playing basketball when he was 5 years old but constantly got finger bleeds or was knocked, ending up on the couch for the rest of the weekend resting, icing, and elevating. There were calls back and forth to the Haemophilia Treatment Centre (HTC) at the children’s hospital, sometimes a visit for the night, even a week or so for factor VIII (8) infusions, immobilisation, and rehabilitation.
Hospital trips were extremely hard for him as he was so scared of needles. It was also very hard for his sister; being his twin and so close to him, she would always want to be by his side. Will’s dad, Chris and I always questioned ourselves: were we doing the right thing allowing him to play a lot of sport? Should we tell him to take it easy out on the court, hold him back from giving it his all? Take that courageous spirit out of him? We wondered what other families did, how did they cope?
So, off to the Haemophilia Foundation family camp we went – to meet other families. I think Chris and I were more scared and nervous than the kids. What were we going to have to face? We had only ever seen the hard, sad times of other patients as well as Will at the hospital. The Foundation family camp has been the best thing we ever did! There were so many amazing families who had to find resilience and bravery just like us. Families that had faced so much in their lives but were all so positive, encouraging, and inspirational.
Will’s new friends at camp gave him the courage to treat himself after they all showed him how they did it. He met some exceptional camp leaders who changed his whole perspective on life with haemophilia. One camp leader showed him that building strength in your body keeps you fit and healthy. To this day, I know he finds inspiration from him. Family camp did not only help Will, it gave Chris and I a newfound hope that we are all going to be ok, that there are so many ways a bleeding disorder can change your life but that’s ok, you can find ways of fulfilling your dreams. Family camp changed our lives forever; the families we meet at our first camp are now our family that we get through life with.
There were still tough times right from the very beginning of our journey with haemophilia but the doctors, nurses and physiotherapist at the HTC were our guiding light. The doctors always encouraged us to let Will live his life to his fullest and we would deal with a bleed when it happened. They taught us how to use appropriate risk assessment while encouraging Will to go forth and follow his dreams.
The physiotherapists were always so supportive as well as informative. Our amazing physio has taught Will so much about how his body works – how to stretch and keep his muscles and body fit. We slowly began to understand through their guidance that keeping fit and strong actually helped to prevent bleeds and maintain joint health.
With the help of our haemophilia nurse – her patience, kindness, and care at times when we felt defeated after a second or sometimes third bleed in a row – we slowly built our confidence to face haemophilia as something that we could all live through, and that Will could actually thrive in ways we never could have imagined. Her connection with Will and all the boys is something that gives them the belief in themselves to always look forward and keep going.
When Will was about 8 years old, it was time for us as a family to decide that we were going to do our treatment at home. This way, Will could get on with his life and do what he loves the most; play sport! So with our nurse’s guidance, we learnt how to treat at home. Dad was the best, never missing a vein and always being an eager patient for Will to practise on.
It was at this time that Will decided to try soccer. I think every family’s journey with haemophilia is so unique and everyone makes their own educated decisions on what sport their child plays. I decided early on that Will wouldn’t play AFL football. Partly because of some of the bleeds he had already endured – including some head bleeds – and partly because of how hard he goes into contact on the field. I felt at the time that soccer may be a safer option.
He was still playing basketball but now also added soccer to his weekly love of sport. So, we watched as our brave, resilient, amazing young boy fall in love with a game that has become his life; training for his club as well as earning a place in an elite soccer academy for his age.
Has there been bleeds? Yes. Have there been difficult times? Yes, but they seem to be all the less painful when Will knew he had to work through a bleed, rest and do his physio so that he could get back out on the field; always icing injuries straight away, resting his injury and calling the hospital for further advice and extra factor treatment if needed. With this drive to always be fit and ready to play, came an understanding that if he wanted to play, he needed to have his treatment. That is when he became dedicated to his treatment times.
That resilience and bravery out on the field is what pushed him to decide to find his own vein and treat himself at 9-years-old. This independence changed his life and gave him a new belief in himself. He began treating two times a week, including every Saturday morning before basketball and soccer.
When Will was 13 years old, he tried out for the National Premiers League team for his local soccer club. When he made the team, training times stepped up and games became more physical and intense, which did not slow Will down. He had also started at a new grammar school where it is compulsory to play Saturday sports and train during the week. So, he added another soccer team to his playing schedule.
This is when all our learning, guidance from the HTC as well as life experience from past bleeds and inspiration from family camp, came together to prepare Will for a level of sport that I never thought would be a possibility in his lifetime.
At this time, the new non-factor subcutaneous treatment emicizumab (Hemlibra®) came along and changed Will’s life. No more finding veins, no more regular needles and even more of an opportunity for Will to play sport at level that we know he dreamed about but never thought possible.
Through Will’s hard work and determination, he has played every season of soccer since he was 9 years old; three years of those seasons at a National Premier League level for different clubs as well as for his grammar school in the AGSV (Associated Grammar Schools of Victoria) competition. Last year he was invited to try out for the First team for his grammar school to play with the top boys in the state from different grammar schools and made the team.
This year as a 16-year-old he is currently playing up a level in the under 17 team for his local National Premiers League team and the club have also asked him to play in their Reserves side which is made up of 18–21-year-olds before they go into senior soccer. He now plays three games of soccer a weekend and some of his opponents are a lot bigger and stronger than him, being much older and developed than him.
But he is dedicated to keeping fit, training four times a week with his different teams as well as building strength through gym sessions. He also always makes sure he is warmed up with stretching before games and after games he stretches down.
Will is still working on recognising a bleed from a sporting injury, but we guide him through each decision. We have a process of Rest, Ice, Compression and Elevate after a game if he thinks he might be having a bleed. Once he learnt to understand that the sooner he recognises a bleed and gets treatment, the sooner he will be back out on that soccer field.
Bad bleeds do still happen and they can be really hard to deal with both physically and emotionally, but Will’s resilience, bravery and courage never cease to amaze. Will and I have many chats about his life with haemophilia; one day we discussed that it is haemophilia that has made him the brave, resilient person he is today and gives him a constant awareness of how lucky he is to be doing what he loves – playing soccer. That bravery, courage and determination is extended out on that soccer field and that is what makes Will such an exceptional player.
While every person’s experience with a bleeding disorder is unique and personal, with guidelines from our amazing doctors, nurses and physios, everyone can have hope for a bright future and follow their dreams. Using the tools we are given such as Rest, Ice, Compress, Elevate – knowing when to rest and rehabilitate and when to use our treatment when needed, a life of health and fitness and passion for sport is now possible moving into a bright future for kids with bleeding disorders.
A final word from Will:
‘Don’t be scared of having a bleed because that is just what comes with having haemophilia. You can always deal with the bleed when it comes to the time.’
For more information on competitive sport for teenagers with bleeding disorders,
* visit the Factored In Youth section on the Haemophilia Foundation Australia website
* speak to the team at your Haemophilia Treatment Centre.
This article was originally published in The Missing Factor Spring 2025, magazine of Haemophilia Foundation Victoria (www.hfv.org.au) and has been adapted with permission.
Images provided by Nicola and reproduced with permission.
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