Charlene and Justin Ebbs are raising awareness about childhood brain cancer to give their baby daughter – and other children – the best shot at surviving it.
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The Dapto parents have been left devastated after Kalani was diagnosed this month with a rare and aggressive brain tumour.
The seven-month old has a fifty-fifty chance of survival, and they’ll do anything to make hers a success story.
‘’Late last year we noticed she was slow hitting those developmental milestones, and by January she started aggressively refluxing her feeds,’’ Mrs Ebbs said.
‘’By the start of March she wasn’t holding any food down and that’s when we rushed her to emergency.
‘’Wollongong Hospital was amazing – they quickly eliminated reflux and other conditions and sent her for an MRI which revealed the brain tumour.
‘’Within hours she was at Sydney Children’s Hospital, and being operated on.’’
Kalani had an Atypical Teratoid Rhabdoid Tumour (ATRT) on her cerebellum and brain stem. Surgery could remove only part of the tumour, due to its location, and the Ebbs are now pinning their hopes on cancer treatment.
‘’She needs intensive chemotherapy and radiation for the next 12 months to give her an opportunity to defeat this horrible disease,’’ Mrs Ebbs said. ‘’ATRT with treatment has only a 40 to 50 per cent success rate. We pray every day that she will be one of those 50 per cent success rate statistics.
‘’We have learnt to never take anything for granted and we cuddle, kiss and tell our children we love them every day as if it were their last.’’
Brain cancer kills more children than any other disease in Australia, and more people under 40 than any other cancer, according to the Cure Brain Cancer Foundation.
Yet, the foundation claims, it receives less than five per cent of government cancer funding and lacks the focus directed to other cancers.
‘’If raising this awareness helps even one family and their child be diagnosed as quick as possible to allow the best possible outcome for treatment then we have done the right thing,’’ Mrs Ebbs said.
Kalani is recovering well from her surgery, and the Ebbs were allowed to bring her home on Thursday for a short time prior to the start of her treatment.
When that starts she’ll have to stay ‘’within five minutes’’ of the Sydney hospital at all times, splitting the family – who have two older children.
A friend has established a crowdfunding campaign to help with accommodation and medical expenses.
To help, visit chuffed.org/project/help-kalani-ebbs-beat-brain-cancer
