Lara girl Emily Cooke shares brain cancer battle with Richard Marles

A Lara mum can see a future for her 11 year-old daughter thanks to a new drug. The pair shared their story with the acting prime minister in Canberra this week.

Emily Cooke, 11, who lives in Lara, has spoken in Canberra to the acting Prime Minister to raise brain cancer awareness. Picture: Alison Wynd

A Lara 11-year-old has had an audience with the acting prime minister to share her story of battling brain cancer.

Emily Cooke has battled a rare form of brain cancer, a ganglioglioma of the brain stem, for six years.

Her condition has recently improved thanks to a drug that was initially invented to treat melanoma in adults.

She went to Canberra this week with her mum Allison to the Brain Tumour Alliance Head to The Hill event to help advocate for increased brain tumour research and improved patient outcomes.

Mrs Cooke said in its second year the event raised awareness of what brain cancer looked like for families, patients, carers and the need to fund it from research to patient supports.

“It was amazing to get together and tell stories of those who have lost family members to brain cancer and an opportunity for people from parliament to hear that it is the biggest killer of Australians under 40,” she said.

“A really poignant part of the day is families can send shoes with a story of a loved one and they were all displayed on the lawn.”

Emily Cooke has a new lease on life after a new drug has significantly helped in her brain cancer treatment. Picture: Alison Wynd

Mrs Cooke said her and Emily spent 40 minutes with Corio MP and Deputy Prime Minister Richard Marles, who was acting in the top job in the absence of Anthony Albanese.

“I am super passionate about advocating because we need to get our stories out there and she also recognises that and wants to be engaged in those events and have her voice heard,” she said.

After going through brain surgery in August, Emily started a new medication, which her mum says has changed her life.

“We hit a tricky spot about 12 months ago where she had quite significant progression,” Mrs Cooke said.

“We were tossing up a radiation therapy in America called proton therapy which is not available here but her team were able to get compassionate access to a drug through Novartis called Trametinib.

Allison and Emily Cooke with Richard Marles. Picture: Supplied

“I can’t describe the chalk and cheese of the child we had when her tumour was so active

and the child that sits with us today.

“There’s the feeling that my child is going to have a future and this time last year we didn’t have that.”

Compassionate access provides medications, often free of charge, when the treatments or therapies are not specifically approved for a certain condition or group of people, particularly pediatric cancer patients.

Each year around 2000 Australians are diagnosed with a brain cancer and the five year survival rates is only 23 per cent.

Mr Marles said meeting Emily was an honour.

“She’s a strong girl, who is also incredibly brave,” she said.

“There are additional challenges faced by people like Emily who have rare and less common cancers — it’s something which the government is committed to improving.”

Brain Tumour Alliance Australia chair Craig Cardinal said the community was determined to bring brain cancer into the national spotlight.

He said the event was a call to action for policy change, more funding for research, and greater support for families affected by the disease.

Originally published as Lara girl Emily Cooke shares brain cancer battle with Richard Marles