Amity's Story

"When we were given the news… It was like a knife wound to my gut, it was just horrendous."

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

Pre-diagnosis

Amity loved her family and showered them with affection. Her two brothers describe her as caring and funny and a little quirky. She also loved to draw, and if anyone in the family was ever hurt or sad, Amity would instantly draw a picture to cheer them up.


Amity was a spirit who just threw herself into life.

- Jackson, Amity's dad

Symptoms

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 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 world fell apart.

Diagnosis

At the hospital, they received the diagnosis: Amity had a brain cancer called DIPG, or diffuse intrinsic pontine glioma. A tumour that grows in the brainstem, DIPG is impossible to surgically remove and has no effective treatment. With an average survival time of just 9 months, the prognosis was bleak.

When we were given the news… It was like a knife wound to my gut, it was just horrendous.

- Mary Ellen, Amity's mum

Treatment

Amity had radiation therapy, designed to shrink the tumour and give her a bit more time. The tumour did shrink, and Amity was well for a while. Her parents made the most of this precious extra time, often taking Amity to her favourite park where she would slide down a giant slide over and over again, screaming with delight. And yet, her mum Mary Ellen says she believes Amity knew she was dying.


If Amity could bear that heartache and yet live with such joy, I think I need to be able to do that too.

- Mary Ellen, Amity's mum

Amity's Legacy

Amity fought the disease valiantly for 18 months. Inevitably, her condition deteriorated and on 11 January 2018, she passed away. But her story is not over. After she died, the tumour was removed from her brain and donated to our DIPG tumour bank. Amity’s cells are now being grown in our labs and used for research into new treatments for DIPG. Amity’s legacy will live on to save other children’s lives.

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If Amity could bear that heartache and yet live with such joy, I think I need to be able to do that too.

- Mary Ellen, Amity's mum