“I don’t want to have haemophilia anymore.”
Belinda and Paul heard these heartbreaking words time and time again as their son Christopher grew up.
When he was just 10 months old, Christopher had his first bleed in his left elbow. At one and a half years old, the bleeding into his elbow wouldn’t stop. His body had developed inhibitors; antibodies which prevent his factor replacement treatment from working.
Christopher was not able to do the things most children take for granted as it put his life at risk.
Haemophilia tested the family’s courage and resilience for what felt like a very long journey fraught with fear and anxiety. Belinda described these times “as always waiting for something bad to happen”.
Children with severe bleeding disorders like Christopher should have access to life-changing treatment – before their childhood is broken for no good reason.
The lifesaving treatment Belinda had been waiting for was finally made available to Christopher late last year.
So far it is making an amazing difference to Christopher’s health and well being. From having a bleed monthly – sometimes even weekly – the young boy hasn’t had a single bleed in months.
Christopher doesn’t have to cope with daily injections or have hospital stays anymore. He can spend his newly gained free time being the active boy he always wanted to be.
Gone are the wheelchair, the leg and elbow splints. Christopher can have physiotherapy on his damaged joints without the fear of causing more bleeds.
Hello playing with kids his own age and going camping with his family. Going camping used to be impossible as Christopher’s daily injections had to be carried out in a highly sterile fashion to avoid infections.
Belinda and Paul are desperately hoping the new treatment will continue to work well for Christopher and allow him to grow into a confident, healthy young adult.
The seven-year old is happier, more confident and independent. What more could we wish for? Christopher doesn’t complain anymore about life with haemophilia. He’s too busy enjoying all the things he couldn’t do before and going to school full-time.
Haemophilia Foundation Australia (HFA) needs your support to advocate for new and affordable life-saving treatments and to continue with its essential services for people with bleeding disorders.
These services cannot be put on hold - especially in these difficult times. Family camps have been cancelled because of the isolation regulations, so it’s all the more important that we keep providing our community with vital information and support through our educational resources and online support networks.
Please help today with an urgent donation to make sure that people living with a life-threatening bleeding disorder get the support they need during the COVID-19 crisis and beyond.
THANK YOU SO MUCH FOR YOUR SUPPORT
PROGRESS HAPPENS WHEN COMPASSIONATE PEOPLE SHARE A VISION AND WORK TOGETHER TO ACHIEVE IT.
Date last reviewed: 25/05/2020