Matthew's story

The thought of having a needle might be scary for most children but not for 10-year-old Matthew.

 

Matthew, one of our 2016 Radiothon Ambassadors, has been having regular needles for as long as he can remember to help treat a rare genetic bone marrow condition known as Diamond-Blackfan Anaemia. The condition results from a failure in the bone marrow to produce red blood cells and affects the body’s ability to function. There is no cure for Matthew’s condition but regular blood transfusions help his body function normally.

Matthew was diagnosed at four months of age after his parents noticed that he was starting to become increasingly pale and significantly more tired than his twin brother, Jack.

“Matthew was too small to know what was going on when he was diagnosed but we were both shocked. We were all very upset and worried about Matthew, not knowing what would happen,” Matthew’s Mum, Ann, said.

Following the diagnosis, Matthew began visiting the Hospital regularly, coming in once every few weeks for a six-hour blood transfusion. These transfusions were coupled with countless blood tests, minor surgeries and various appointments to make sure treatment was working.

For Matthew and his family, this process was routine for several years until 2013, when his body started producing red blood cells on its own. "Matthew is currently in a remission of sorts. Last year his condition returned and he had to go back to regular transfusions, but over the last couple of months he looks like he has started making blood again," Ann said.

“We hope that Matthew might not need any more transfusions but his condition has been and continues to be a cause of great concern for us. We don’t know if they will find a cure and we don’t know how long remission will last.”

For now though, Matthew is doing well and is enjoying getting back to the things he loves most, like reading and spending time with his friends.

“Without the specialist units at The Children’s Hospital at Westmead, like the Haematology Unit that looks after Matthew, it would have taken so much longer to find this rare diagnosis and begin treatment. We are so grateful to have such a great paediatric hospital in Sydney."