Cassie shared her experience raising a young family that comes with an extra challenge – her son Noah has haemophilia B.
“Having a son without haemophilia felt easier in the sense that you’re more relaxed as a parent. You’re not constantly watching their every move or worrying about what could happen. With Noah, there’s a level of vigilance that never really switches off, but it comes from wanting to keep him safe while still letting him be a little boy.”
Cassie is a mum of three children: William, Noah and Isabelle. Their busy household is full of the usual noise and energy of family life. But for Noah, their second son, life comes with an extra challenge; he was diagnosed with haemophilia B at birth.
For Cassie, the diagnosis wasn’t entirely unexpected. “I’m a carrier, and my dad has haemophilia,” she explains. “I grew up understanding the condition and what it can mean for families.”
Still, knowing about haemophilia and living with it are two very different things.
Today, Noah receives weekly treatment at home through a port-a-cath.
“Our Sundays are treatment days, and they’re far from relaxing. There’s a lot of nerves and often tears. As parents, there are moments when you think it would be easier not to go through it, but we always come back to doing what’s best for Noah, not what feels easier for us. It also means always planning ahead, taking treatment with us on holidays or trips, and constantly thinking about safety while still letting him enjoy life.”
It hasn’t always been smooth sailing. Cassie’s family lives in regional New South Wales, where haemophilia isn’t always well understood and planning long hospital stays away from home and being separated from their other children are some of the hardest parts.
“Noah has had a porta-cath inserted, had his tonsils and adenoids removed, grommets put in, and foot surgery after putting his foot through a window and cutting tendons. The most difficult was his tonsil surgery. We had to stay away from home for 4 weeks. Just when we thought we were going home, I woke up to find Noah had bled during the night. That was incredibly confronting.”
Cassie reflected that there has been a lot of learning and teaching so far on their family’s journey for Noah. As he gets ready to start school, they have begun preparations with their HTC nurse and are working with the school so they can learn how to manage his condition and have some training.
Cassie’s advice to other families starting this journey is “Build a strong support network, trust your instincts, and don’t be afraid to advocate for your child. Our Haemophilia Treatment Centre team has been incredible.”
“And the Haemophilia Foundation has been such a valuable source of information and support. Knowing there’s a community that understands what you’re going through really means a lot.” “It can be emotionally exhausting at times. There’s always underlying worry, but also a strong determination to give Noah the best possible life.”
“It’s about finding that balance between protection and freedom. We want Noah to be safe, but we also want him to experience life fully and not feel limited by his condition.”
“We hope Noah can live the best life possible, doing everything he sets his mind to, and eventually being able to manage his own treatment confidently.”
