Project Description

From the outside, Bracken Ridge local, Riley, looks like a typical four-year-old. However, inside his body it’s a different story. Riley has Congenital Dyserythropoietic Anaemia (CDA), a rare type of anaemia, which affects the production of his bone marrow and means there are not enough blood cells to carry oxygen throughout his body.

Riley’s parents, Britney and William, discovered he had anaemia via a blood test while he was in utero.

“His condition caused a lot of issues in utero,” Britney says. “He had growth restriction, an enlarged heart and hydrops as well as high blood flow to the brain and underdeveloped lungs. We were told he had a five per cent chance of surviving the pregnancy, so we prayed for a miracle, and that’s exactly what we got.”

After Riley was born, he was diagnosed with CDA and was required to have a life-saving intrauterine blood transfusion, delivered through the umbilical vein to replace his red blood cells.

Riley weighed only 1.1kg at birth and had many transfusions during his first nine weeks of life. His lungs were underdeveloped which meant he had to spend the first year of his life on oxygen.

As a result of his prolonged hospital stay, Riley also has global developmental delay.

“He was quite late to crawl and walk and has only begun to talk in the last 18 months,” Britney says. “But he is getting there and we are so proud of all he has accomplished and learnt.”

Riley still requires three weekly transfusions to boost his red blood cells and daily medication to lower his excess iron levels.

While Riley’s long-term prognosis is yet to be determined, Britney remains positive.

“From the moment he was born, Riley has inspired me – he is our miracle. He defies the odds and keeps going with a smile on his face. He is the happiest, funniest and most loving little boy and he doesn’t let anything get him down. His strength and personality inspire me to do better, to embrace what you can’t change and to live life to the fullest. He taught me that superheroes do exist and he is most definitely mine.”