Erin's Story

"I want to make a difference."

A diagnosis with an incurable brain cancer brought 11-year-old Erin Griffin’s world crashing down around her. When she passed away in September 2014, she donated the tumour that took her life to our research. Here is her incredible story.

An energetic six-year-old

Erin was born in Scotland and moved to Australia with her family when she was six years old. An energetic and sporty kid, Erin enjoyed gymnastics, ice-skating, dancing, soccer, surf lifesaving and going to the beach.

Erin's favourite pastime was shopping. She loved fashion and took great pride in her appearance.

- Amanda, Erin’s mum

Something's wrong

At age 11, Erin started to experience severe headaches, nausea and vomiting. A CT scan led to the four words no parent wants to hear: Your child has cancer.

There is no conversation harder than telling a parent their child has cancer and there is no treatment.

- Dr David Ziegler

Diagnosis

Erin was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) - a rare brain tumour that develops in the brainstem, affecting the nervous system. DIPG has zero survival rate. Erin was given nine months to live.

I was terrified. I had no idea kids got brain cancer, or that so many children died from cancer.

- Amanda, Erin’s mum

Treatment

Erin's treatment included 30 rounds of radiation, chemotherapy and surgery at the Women and Children's Hospital in Adelaide. She was also included in a gene therapy clinical trial at the Children's Hospital, Westmead, in NSW.

Making a difference

When Erin passed her survival prognosis of nine months, she started campaigning to raise awareness and increase funding for childhood cancer. She petitioned for paediatric cancer research to be made a national priority and spoke at Curefest in Washington DC.

I don't want another family to go through this in 20 years' time because no-one took on board that brain cancer is the nation's biggest killer of kids.

- Amanda, Erin’s mum

A turn for the worst

On the way home from a family holiday to Scotland in July 2014, Erin started to deteriorate very quickly with headaches, poor balance, seizures and pneumonia. She was hospitalised and slowly lost the ability to communicate. See Erin on Sunrise in August 2014.

Erin passes away

Erin passed away on 1 September 2014, minutes into International Childhood Cancer Awareness Month. She was 14 years old.

Erin's mission was to spread international awareness of childhood cancer, so she held on until September. Her contribution to the world would have been amazing.

- Amanda, Erin’s mum

Erin's legacy

Erin donated the tumour that took her life to researchers at Children's Cancer Institute, in the hope that the knowledge gained from studying it might ultimately help to destroy DIPG and spare the lives and suffering of other children.

Use these samples, our brain tumours group has tested over 10,000 drugs in the lab and have found several promising candidates, that could lead to the first treatment for DIPG.

I believe we can do for DIPG what has already been done for leukaemia. Once the survival rate for leukaemia was zero; today it's 85%. With enough funding, we can do the same for DIPG.

- Associate Professor David Ziegler, Group Leader, Brain Tumours

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