Declan's story

As a family, we have experienced first-hand the difference research is making.

- Kim, Declan’s mum

Everyone who ever met Declan was touched by his wisdom, determination, and unfailing sense of humour. He fought cancer with everything he had, even taking part in a groundbreaking clinical trial.


Just before he turned four, Declan was diagnosed with stage 4 (advanced) neuroblastoma. A scan showed up a tumour in his abdomen the size of his dad’s fist. The cancer had spread to his bones and bone marrow and was growing aggressively. He started treatment straight away.


Declan’s treatment began at Princess Margaret Hospital in Perth. He had five gruelling cycles of chemotherapy, followed by a nine-hour operation to remove his tumour. During treatment, his parents, Kim and Simon, tried to keep things as normal as possible for the family, although Declan had to give up swimming, which he dearly loved.

It was also really hard on Brodie, Declan’s younger brother, because he missed out as well. But it wasn’t fair to take Brodie swimming and have Declan just sitting and watching.

- Kim, Declan’s mum

Highs and lows

In August 2013, Declan was declared in remission – a big day for the family. After several more months of gruelling treatment, including radiation therapy and immunotherapy, he was allowed to go home two months early because he had been handling it so well. But sadly, this was not to last. By January 2015, scans showed two new tumours, one on Declan’s spine and another on his left hip. He had relapsed.

Clinical trial

In April, Declan was enrolled on a clinical trial testing a new drug called DFMO, which research at Children’s Cancer institute had indicated could be an effective treatment for neuroblastoma.

The early results were very positive. After four months, the tumour on Declan’s spine had gone, and the tumour on his hip had shrunk. His follow-up scan in December 2015 showed no further progression.

We heard about a DFMO trial being run at Sydney Children’s Hospital, which was based on research undertaken by Children’s Cancer Institute. It was our only hope.

- Kim, Declan’s mum

Declan's brave battle

Sadly, Declan’s follow-up scans in June 2016 showed that the tumour on his hip was growing again. The following May, Declan passed away. His brave battle was finally over. To view his full story, click here

If it wasn’t for research, this trial wouldn’t have happened, and we wouldn’t have had Declan for as long as we did.

- Kim, Declan’s mum

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