Hugo’s parents Ollie and Brooke Long lived every parent’s worst nightmare when their baby boy Hugo was diagnosed with a fast-growing and highly aggressive tumour.
At only 11 weeks old Hugo was diagnosed with Atypical Teratoid Rhabdoid Tumour (AT/RT) brain cancer which is only found in children, mostly under 3 years old. It is a rare, aggressive and malignant disease with no cure.
The treatment options available can prolong life on average on 12-18 months.
Hugo spent 7 months undergoing high dose chemotherapy in hospital and battled the life-limiting side effects before passing away aged 21 months in April, 2024.
“The Hugo Long Sunshine Fund was established because no child should have to endure what our precious Hugo did in his short life.” – Ollie and Brooke said.
“We hoped for a miracle to save Hugo – our hope is now for a future where no family has to rely on a miracle but is supported by targeted life-saving treatments”
Hugo’s parents are committed to support more vital research into paediatric brain cancer, to develop new therapies & treatment options.
In Australia, more children die from brain cancer than any other disease. The survival rates for paediatric brain cancer haven’t improved in 30 years.
We are determined to change this. To improve outcomes and quality of life for patients like Hugo.
Despite advances in other types of childhood cancer, survival rates for brain cancer have made little progress over the past 30 years.
“I think it is still shocking to people when they learn that brain cancer is still the biggest killer of kids in this country.”
“We’ve seen significant improvement in survival outcomes in other cancers. A young person coming in as a PhD, committing their career to brain cancer, the outcomes are incalculable” Sam McGuane, CEO The Brain Cancer Centre.
Hugo’s Legacy
Brooke & Ollie are passionate about changing the future for kids just like Hugo.
They’re committed to help raise awareness and vital funding for paediatric brain cancer research.
They’re committed to raise funds to support researchers whose work advances the understanding of AT/RT. To help develop new treatment options for kids with brain cancer.
This could be the piece of the puzzle that creates game-changing results and improves outcomes for kids with brain cancer.
We want to make sure that every Australian child diagnosed with brain cancer has access to better treatments and clinical trials than there are currently, to be given real hope for a positive outcome.
We need your help to do that.
