Byron Bay teen’s family provide heartbreaking update in fight against rare and aggressive cancer

A Byron Bay teen documenting his treatment for a rare and aggressive brain tumour has taken a heartbreaking turn as his family reveal he cannot walk or talk as he undergoes treatment in the United States.

Olivier “Livi” Eddington, 17, was diagnosed earlier this year after he started getting headaches. He has been participating in a clinical trial in the hope it will give him a chance to beat the condition.

Livi has been chronicling his journey on TikTok, posting video updates which garnered millions of views as he participates in the CAR T-cell trial at the University of North Carolina, home to the Lineberger Comprehensive Cancer Centre.

“These experimental treatments involve re-engineering cells from the patient’s immune system to recognise and direct the attack against the patient’s cancer,” the centre says.

The cells are collected and sent to a lab where genetic information is added, along with “chimeric antigen receptors” – a type of synthetic protein.

Hundreds of CAR T-cell clinical trials have taken place around the world, the majority of them focused on blood cancers such as leukemia, but some have also focused on solid tumours and other conditions.

Despite some encouraging signs, Livi has also experienced multiple seizures, spending time in an induced coma and in intensive care. Livi’s family say he will now undergo radiation treatment amid an “extremely serious” situation.

“Unfortunately, Olivier’s condition has continued to deteriorate, and things are really not looking good right now,” the Eddington family revealed through an online fundraiser this week.

“He is now unable to walk, talk, roll over in bed by himself, or even drink water properly.

“The simplest things that we all take for granted have become incredibly difficult for him.

“It is absolutely heartbreaking watching someone so young, strong, and full of life go through this.

“He is only 17 years old and has already fought harder than anyone should ever have to.”

The fundraiser has so far raised more than $148,000 towards its $160,000 goal to help cover treatment costs in the US. Any remaining funds will be donated to brain cancer research.

A community fundraiser at Byron Bay High School also raised more than $35,000 earlier this month.

“Our small town has truly come together to support one of its own, and we are so grateful for everyone’s generosity and care – it really means a lot,” the school said.

“We have a few bald staff members around our school today – they’ve shaved their heads in support of Livi and to show him he’s not alone in this fight.”

Livi’s father, Blake, told NBN News earlier in October the teen started having headaches in January, before a tumour was found during a brain scan. He was diagnosed with a high-grade glioma, a fast-growing and aggressive, cancerous tumour.

The rare tumours are primarily diagnosed in adolescents and young adults, according to a review of research published in a Nature partner journal in 2025.

Livi has been documenting his treatment online.

“I’m 16 years old with brain cancer, and this is what I did today,” he says in the first video in a series on “beating brain cancer”, which has had more than four million views.

“I sat in hospital all day, felt pretty shit, it’s affected me heaps.”

A few days after the first video, Livi was in a medically induced coma after a series of seizures as his 17th birthday approached.

He returned on camera for day eight of his journey.

“Sorry about yesterday, sorry I didn’t post, I’ve been unwell,” he said.

“Had a seizure and was in a coma for a few days but I’m now way better,” he said.

On the fundraising page Livi says surfing was his “whole life” and it “honestly sucks” that he can’t surf at the moment, but hopes he will again one day.

“My balance is cooked and my brain doesn’t work the way it used to … but getting back in the water is one of the things keeping me going.”

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