After The Death Of Their Son, A Sydney Family Is Raising Funds For Rare Cancer Research

A family who had its world turned upside down when they found out their son had an aggressive form of brain cancer is fighting to change the future for other children.

Gary McInnes and Geraldine Woo are fundraising for research into new treatments, hoping that one day, every child will survive a similar diagnosis.

Isaac had his whole life ahead of him, but at end of 2017 at the age of 12, he was diagnosed with a rare brain tumour, known as Anaplastic Astrocytoma, that left him blind, wheelchair-bound and in constant pain.

Isaac McInnes. PHOTO: Supplied.

He’d just finished his first year of high school when his symptoms started.

The young boy, described by his family as an "old soul" and a "gentle giant", began suffering headaches and vomiting.

Doctors initially put it all down to stress and anxiety, but after he lost 10 kilograms and began suffering from severe dehydration, doctors found a brain tumor.

Isaac. PHOTO: Supplied.

In a matter of months, Isaac underwent multiple surgeries and six weeks of daily radiation alongside 10 cycles of monthly chemotherapy as his body fought to survive.

But, sadly, within a year, he died at the age of just 13.

His mother Geraldine says despite the pain of watching her son endure aggressive treatment and operations, the hardest part has been living without him.

"A lot of people keep saying to us this year 'gee, last year must have been hard”... it's quite funny how you forget -- forget the chemo, you forget about the radiation," Geraldine told 10 News First.

The pain and the suffering we feel now is indescribable.

On Sunday, the family celebrated their first Father's Day without Isaac.

His father, Gary, said every day is hard for the family, but we think about him every day.

"I thought my world had turned upside down when my son was diagnosed with a brain tumour, that now seems insignificant compared with losing him completely."

The McInnes family. PHOTO: Supplied.

After receiving their son's devastating medical results in August last year, Isaac's parents decided more needed to be done to help children facing similar diagnoses.

The pair began fundraising for The Children's Cancer Institute for research into what they call "wild type tumours".

They're raised more than $800,000 so far, but their goal is to get to $1 million.

"We were hopeful that it would help Isaac, but obviously it wasn't to be," Gary said.

"But if we can help, even if it's one other kid..."

Isaac. PHOTO: Supplied.

Around 750 children are diagnosed with cancer every year across the country, and around 100 of them will die from the disease.

"It's sometimes so unbearable just to get up in the morning and keep going," Geraldine said.

"I just can't describe it... even if it was four years of a cancer battle -- living without them is just so much harder."

Tonight, the Sydney Opera House will again turn gold to mark the start of Childhood Cancer Awareness month, in the hope of raising funds for research that will one day help prevent any more families being forced to deal with a loss like that of the McInnes.

To donate to the McInnes family's fundraiser click here.