When a little girl dies at nine years old, it’s all the life she hasn’t lived that hurts so much.Ren, Amy's dad
When Ren & Sharon's daughter Amy was diagnosed with terminal cancer at just 7 years old, she went from a bounding ‘Duracell bunny’ to losing her ability to walk and speak in under 18 months.
Amy was a feisty little redhead who loved ballet, athletics, singing at the school talent show and wearing monster teeth (a lot). She loved fishing with her dad and was a pro at baiting the hook, even with perfectly manicured fingernails. In her dad’s words, she was an ‘unstoppable force’.
But just after her ninth birthday, something did stop her – a deadly brain tumour called Diffuse Intrinsic Pontine Glioma, (DIPG). It’s an aggressive childhood cancer for which there is no cure.
No family, no child should ever have to suffer the horrors of this disease.
DIPG is an insidious, sneaky tumour that grows undetected in the brain stem. By the time you notice something isn't quite right, it's too late. You don’t know it at the time but the tumour is already taking over. And there is nothing you can do to stop it.
Through 80% of the journey we thought she'd beat it in the end, because she was a super girl.
The Lady Cilento Children’s Hospital became Amy's second home. Her days were filled with treatment, including radiation. It creates a hard shell around the tumour - which briefly makes it look like Amy is winning. But then, like an egg, the shell around the tumour breaks and the disease seeps out and takes over.
DIPG is regarded as ‘terminal upon diagnosis’. The biggest problem any research into this disease has faced, has been the lack of DIPG tumour tissue - this is because surgery is usually impossible. We’ve solved this by establishing protocols to create the world’s first ever bank of DIPG tumour samples. As a result, we have identified that the drug, CBL137, has shown very promising results in biological models. The first clinical trials using CBL137 on DIPG patients are scheduled to begin in 2018 offering hope to DIPG patients for the first time ever.
Amy never asked about death. She always thought that her daddy would save her, no matter how sick she was.
Amy's last birthday
Just after her 9th birthday, the disease took over, and tragically, Amy passed away just 16 month after diagnosis.
Since we lost Amy, I’ve used every ounce of energy I have to raise money for research that will find the answers to DIPG. My pledge to our little angel, is to do everything in my power to find a cure.
I’m honoured by Ren’s trust and commitment – and I’m absolutely determined not to let him down, together we need to cure childhood cancers like DIPG.
Years after Amy passed away, Ren and Amy’s mum, Sharon, are still finding notes that Amy hid all over their house. These ‘treasures’ show just what a caring, loving little girl Amy was. Even after she was gone, she wanted her family to know how much she loved and missed them.