When a child is diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), they are given roughly 12 months to live. This is the heartbreaking reality for around 20 Australian children every year, but it is a reality our teams are working hard to change through a new clinical trial.

For the first time outside of the United States, doctors in the Kids Cancer Centre at Sydney Children’s Hospital, Randwick (SCH) will use CAR-T cell therapy to try to attack and destroy the fatal tumour, offering new hope to children living with the devastating disease.

DIPG is the most aggressive of all childhood cancers and is one of the only cancers that still lacks effective treatment. The rare, fast-growing and incurable tumour forms in part of the brain stem called the pons, which is responsible for vital functions like breathing, sleeping, bladder control, and balance.

The trial, called Levi’s Catch, will use CAR-T cell therapy to genetically modify a patient’s own immune cells in a laboratory to teach them to target and attack the tumour. Once reinfused into the patient, it is hoped these immune cells will have the ability to scan and destroy harmful cancer cells without damaging most other healthy cells.

Clinical trial lead, Professor David Ziegler, Senior Staff Specialist in the Kids Cancer Centre at SCH and Group Leader of the Brain Tumours Group at Children's Cancer Institute said this is a cutting-edge approach to treating DIPG.

“This is a completely new way of attacking this deadly brain cancer. If we can take what we have already learnt in the use of CAR-T cell therapy for treating other childhood cancers and translate this to help treat kids with brain cancer, it could be a game changer,” Professor Ziegler said.

The trial is hoped to help children like eight-year-old Levi, who the trial is named in honour and memory of.

Levi was diagnosed with DIPG in later 2017 after his parents noticed he had started to go cross-eyed. Levi was soon referred to the Kids Cancer Centre at SCH, where his gruelling treatment began.

In the 12 months that followed diagnosis, Levi endured brain surgery, an operation to insert a port-a-cath, 30 rounds of radiation, 14 cycles of immunotherapy, two months of an experimental drug, 11 MRIs, 2 CAT scans, countless blood samples and neurological examinations, and many trips to hospital.

Despite everything he was going through, Levi lived his life to the fullest, but sadly, in December 2018, his tumour took control. Levi passed away on New Years' Eve.

Professor Ziegler says it's children like Levi who drives their research.

“Every year, we see too many children, like Levi, die of this devastating disease. These children are what drives our research and reminds us that we need to be on the cutting-edge of research and treatment every, single day.”

“It’s because of these kids that we will never accept the status quo and will continue to push boundaries so children don’t have to die from DIPG.”

To honor Levi's legacy, his parents, Ben and Kath, set up Levi’s Project and have since raised more than $4 million, with another $2 million pledged for DIPG research. This includes contributing $600,000 towards the Levi's Catch trial.

“Having seen firsthand the devastating effects of DIPG, we are proud that Levi’s Project is able to fund such important work,” Kathryn said.

“We are excited to see this clinical trial, in honour of our boy Levi, open across Australia, providing what we hope will be first effective treatment for children with this devastating disease.”

Professor Ziegler said this support has been integral to making the trial possible.

“Through their fundraising efforts, Levi’s family and friends have really boosted our DIPG research program, both in the labs and in clinical trials. Thanks to their support, we are one of the first places in the world to be able to offer this sort of treatment and give new options to help kids like Levi.”

Levi’s Catch is open to children across Australia and is a collaboration between the Kids Cancer Centre at SCH, Children’s Cancer Institute, Royal Adelaide Hospital and the University of South Australia, with support from the Cancer Institute NSW.