Ellie's Story

"We waited 8 years for Ellie to arrive. To be told she may not survive broke my heart."

Ellie was 11 months old when she was admitted to hospital, having been unwell for a couple of weeks. Within days, she was on life support. Then a dramatic turn of events gave her a second shot at life.

Pre-diagnosis

Ellie was just about to turn one year old when she began to show signs of being unwell. Her mum, Mina, and dad, Rob, were concerned about Ellie repeatedly vomiting and decided to take her to the paediatrician. After some tests were run, they were told Ellie was very sick and needed to go to the hospital straight away.

Diagnosis

At Sydney Children’s Hospital, Randwick, doctors ran a scan and found a tumour in Ellie’s chest the size of a football – so large it was pushing her tiny heart and lungs to one side. Very soon after that, Ellie went into the Intensive Care Unit and was put on a ventilator, no longer able to breathe unaided.


I wanted to take the cancer away from her - I would have taken it on myself rather than see her suffer.

- Mina, Ellie's mum

Ellie went on chemotherapy, but after two weeks, the tumour showed no signs of responding. In fact, it continued to grow bigger. Nothing seemed to be working and time was running out. Ellie was enrolled on the Zero Childhood Cancer Program clinical trial.

Clinical trial

A sample from Ellie’s tumour was sent to our labs, where our scientists did a detailed genetic analysis. The team identified Ellie’s cancer as infantile fibrosarcoma and found a rare genetic mutation likely to be driving its growth. Best of all, a new drug was identified that specifically targets that genetic mutation. Once the drug arrived from USA, treatment began immediately.

Results

The new treatment had an extraordinary impact. Day by day, Ellie got better. Within four weeks, she could breathe on her own, and within six weeks she had moved out of Intensive Care. Mina & Rob couldn’t believe the amazing results. They had their little girl back. No words could express their gratitude.


We know that if Ellie had been diagnosed with this cancer even two years ago, she would have died. She is only alive today because of the Zero Childhood Cancer Program.

- Mina & Rob, Ellie's mum & dad

Zero Childhood Cancer

The Zero Childhood Cancer Program is the most ambitious childhood cancer initiative ever undertaken in Australia. This program is led by Children’s Cancer Institute and the Kids Cancer Centre at Sydney Children’s Hospital, Randwick bringing together all major Australian clinical and research groups working in childhood cancer to offer Australia's first ever personalised medicine program for children with high-risk or relapsed cancer.

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