Amity's Story

Amity's story

How could someone so young have such a profound impact on the world?

Amity had an extraordinary energy for life. She was creative and caring. She constantly surprised and delighted the people around her. But when she was five years old, she was diagnosed with the deadliest cancer a child can get.

meet Amity

Meet Amity

Amity had an extraordinary energy for life. She was creative and caring. She constantly surprised and delighted the people around her. But when she was five years old, she was diagnosed with the deadliest cancer a child can get.

DIPG, Diffuse Intrinsic Pontine Glioma. A tumour that grows in the brainstem and is impossible to surgically remove without damaging healthy tissue. It has a 0% survival rate. On 11 January 2018, DIPG took Amity’s life. But what she left behind is changing the world.

Amity loved her family deeply and showered them with affection – especially her siblings. Her brothers describe her as caring and funny and a little quirky. She wanted a dinosaur birthday cake for her sixth birthday, declaring that she hated princesses because “princesses don’t have awesome adventures.”

Amity loved to draw. She drew to make people happy and everything she drew she gave away to those she loved. If anyone in the family was ever hurt or sad Amity would instantly draw a picture to cheer them up.

When Amity’s joyful energy drained from her, her family knew something was wrong. She started to lose her balance and stare into the distance. One day, when Amity was out shopping with her Mum she suddenly lost the ability to walk. Amity was rushed to the Westmead Children’s Hospital. In just a few hours, the family’s whole world fell apart.

Amity had radiation therapy, designed to shrink the tumour and give her a bit more time. The tumour did shrink and Amity was well, really well. She spent a lot of time at her favourite park with a giant slide that she loved. Amity would go up and down the slide 20 times screaming with delight all the way down.

But later, as her balance worsened and she was gripped with vertigo, Amity desperately wanted to climb her favourite slide just one more time. Without a word to anyone, she quietly took herself off toward the slide with her unsteady gait and started up the six flights of stairs.

One step at a time, she made it to the top all by herself. She told her Mum, “I’ve worked out what to do – I don’t look up and I don’t look down, I just look at the next railing.”

That was the ‘Amity way’ – to keep going until she found a way.

From the age of three, Amity always said she wished to be a scientist when she grew up, so she could get answers to all her questions.

At her most sick, her burning question was, why couldn’t she be cured? The only answer her parents could give was – the scientists are still searching.

To help with that search, Amity’s family honoured her wish to do something for science. They donated her tumour to our Children’s Cancer Institute tumour bank.

Amity has had an incredible impact on the world. Her tumour sample has helped lead to our first-ever clinical trial. Amity’s dream of finding answers is coming true.

Thanks to Amity we now have a chance to find a cure for DIPG.

Our tumour bank is the only one of its kind in Australia. Amity’s tumour sample, combined with several others, is now helping to shed light on questions that have previously been unanswerable. In the most important progression in research into DIPG since it was first diagnosed, we have just initiated a pioneering clinical trial.

Amity’s story is not over. Her legacy will continue to help other children to survive.

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