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.
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.
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.
Diffuse Intrinsic Pontine Gliomas (DIPGs) are the most aggressive and deadly of all childhood cancers. They are described as 'terminal on diagnosis', which means there is no cure, no effective treatment and no hope of survival. Surgery is impossible, and most children succumb to the disease within one year. Over the last 30 years, almost nothing has changed for DIPG patients in terms of treatment or outcome.
I was terrified. I had no idea kids got brain cancer, or that so many children died from cancer.
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.
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.
The biggest problem is our limited knowledge of DIPG biology. Unlike most other tumours, it has been impossible to take a biopsy of a DIPG tumour, because doing so is too dangerous to the patient. As a result, DIPG tumours have rarely been studied in the laboratory.
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.
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.
Erin donated her tumour to a project being undertaken by the Institute's own Dr David Ziegler. In a world-first, Dr Ziegler devised a plan to test 10,000 drugs for their effectiveness on DIPG tumour tissue samples to discover which might inhibit DIPG cell growth. His team has already tested more than 3,500 drugs and are working on a handful that appear to be extremely effective.
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.