The family of Livi (Oliver) Eddington, a 16-year-old from Byron Bay, are asking for help from the community as he undergoes experimental treatment for an extremely rare and aggressive brain cancer.
Livi is a Year 11 student and grew up around Byron Bay and the Northern Rivers. Before becoming sick, surfing and being outdoors were a huge part of his life.
Rare brain tumour
His brother Xavier contacted The Echo, revealing that he has diffuse hemispheric glioma, H3 G34R-mutant, WHO grade 4 – a rare brain tumour that mainly affects adolescents and young adults.
‘Our family has been told he is believed to be the first person with this specific tumour type to receive B7-H3-targeted CAR-T cell therapy, making his treatment potentially a world first for H3 G34R diffuse hemispheric glioma,’ said Xavier.
Livi is currently in North Carolina undergoing experimental treatment.
‘The treatment involves taking Livi’s own immune T cells, genetically engineering them to recognise a protein on his tumour, and delivering millions of those cells directly into the fluid spaces around his brain through an Ommaya reservoir,’ said Xavier.
‘Following his latest treatment, Livi suffered multiple seizures and a severe immune response. He had to be moved into intensive care, placed on a ventilator and put into a medically induced coma. Thankfully, he has since woken up, just before his 17th birthday on Monday, 28 September.’
Fundraising
On his GoFundMe page Livi says, ‘My family and I have had to come all the way to North Carolina in the US so I can take part in an experimental CAR-T cell trial. I’m believed to be the first patient with my specific type of brain tumour to receive this treatment. There are no guarantees, but it gives me a chance and I want to take it.’
Livi has also started documenting his cancer journey on TikTok.
‘Our biggest hope is obviously that this treatment helps Livi,’ said Xavier.
‘But also that what doctors learn from his case may one day help other young people diagnosed with these rare brain tumours.’
You can support Livi at: www.gofundme.com/f/livi-16-brain-cancer-took-the-surf-help-him-fight-back.
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