Hugo’s Story

14 months ago Brooke and Ollie welcomed a beautiful healthy baby Hugo.

One year ago, their world was shattered. At only 11 weeks old Hugo was diagnosed with a rare, malignant and extremely aggressive brain tumour. Atypical Teratoid Rhabdoid Tumour (AT/RT).

After an initial scan showed a mass on Hugo’s brain, he was airlifted to Queensland Children’s Hospital where an MRI uncovered a large tumour on his cerebellum. He underwent a series of life-saving emergency operations to drain the fluid and relieve the pressure from his brain.

Hugo’s parents were told they would be lucky if Hugo made it through treatment given his young age and vulnerability, and was only given a 10% chance of survival. 

Hugo spent the next 7 months in a specialist ward in hospital. Brooke & Ollie gave up their jobs and ended up living in the hospital for 184 days.

Hugo fought through 4 brain surgeries and 5 rounds of adult strength high-dose chemotherapy. The side effects for tiny babies like Hugo are awful. Hugo endured high fevers almost every day, had numerous seizures and over the 7 month course received over 40 bags of blood.

Brooke & Ollie have had to decide whether to keep putting Hugo through this agonising chemo treatment to keep him alive.

No child or parent should have to go through this.

Hugo is now taking an experimental drug that they hope will save his life.

Treatment options for AT/RT are limited. Most children die from this type of tumour.

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 raising funds to support the Hugo Long Fellowship, awarded to a young brilliant mind dedicated to research in paediatric brain cancer.  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.

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