Hugo’s Story
Brain cancer can strike at any age and sadly in the case of baby Hugo, his diagnosis was discovered at just 11 weeks old. Incredibly, he had a rare and aggressive brain tumour which had limited treatments options and a dire prognosis.
For parents Brooke and Ollie, what started as an uncomplicated and happy start to life with a little one, very quickly turned into a nightmare. Recognising the signs of a very serious situation, Hugo’s medical professionals at Lismore Base Hospital evacuated him to Queensland’s Children Hospital for immediate surgery to release the pressure from his brain and biopsy the tumour.
The diagnosis was grim, Hugo had a grade 4 atypical rhabdoid tumour (ATRT), it was inoperable and could not be treated with radiation. What followed was a gruelling seven months of intensive chemotherapy, something a tiny baby should never have to endure.
Hugo’s tumour has shrunk by 98 per cent and Brooke and Ollie are incredibly grateful for this result, however the potential for the mass to grow back is unfortunately a very real possibility. Hugo is now home and undergoing a trial drug therapy which is hoped to be the best chance of removing the remaining tumour cells.
Peace of Mind Foundation Advocate Fiona Haasmann was humbled to walk alongside this beautiful family in her role for the organisation’s National Advocacy Services (NAS).
“Here was this amazing little boy going through the absolutely worst start to life imaginable, and he needed support, immediate support, and so did mum and dad.”
As part of the free services offered by NAS, Fiona was quick to navigate assistance that might help the family bring Hugo home to Lennox Head after many months in hospital.
Following a referral sent by their Hospital, Fiona began liaising with both the family and their clinical team. This linked communication ensured that not only did Hugo have a holistic team working towards positive outcomes, but it also further allowed the NDIS process to be not only therapy appropriate but to equally fall into the support needs that the family would need to return home.
This was a team effort that has ultimately seen a balanced NDIS plan formed but equally connections to appropriate supportive networks outside of the hospital setting. All ensuring a safe environment, and supported spaced for the family overall.
Like to help a brain cancer patient like baby Hugo? There are many ways you can – read our how to help brochure for some ideas.
