The parents of a little boy with terminal brain cancer will raise money and awareness in his name in the hope that others will not have to experience the same heartbreak.
Hugo Long had the time of his life on Christmas Day tearing open presents, climbing over everything, swimming and playing with his cousins.
But sadly this Christmas was the 18-month-old's last, after doctors delivered devastating news to new parents Ollie Long and Brooke Carter.
They were told a fortnight ago that their son has two incurable tumors in his brain, after one, diagnosed when he was 11 weeks old, grew back in its original location.
The couple, from Lennox Head in far north NSW, have vowed to make the most of the precious time they have left with Hugo.
Hugo's first Christmas in 2022 was spent in the hospital where he underwent chemotherapy. Sadly, this year's Christmas family photo will be the last
Hugo Long (photo) has two incurable brain tumors and still has months to live
“We're told it will probably be less than six months – it could be weeks or even days,” Mr Long told Daily Mail Australia.
The couple has a fellowship fund in Hugo's name to raise awareness and proceeds for brain cancer research.
They have a goal of $100,000 to fund a dedicated researcher at the Brain Cancer Center in Melbourne to study immunotherapy options for this aggressive brain cancer.
When the time comes, Hugo's brain will also be donated to research in the hope that a cure will one day be found.
His brain will be stored in a tumor bank in Brisbane until researchers need it.
Tumors of the central nervous system (mainly brain tumors) are responsible for 39 percent of cancer deaths in Australian children, followed by leukemia (22 percent) and neuroblastoma (13 percent).
“Hugo's legacy will be eternal,” Mr. Long said.
Sunday evening is the last time Hugo helps prepare snacks for Santa and his reindeer
Ollie Long and Brooke Carter have promised that Hugo's legacy will be eternal
'Brain cancer kills more children than any other disease in Australia.
'All brain cancers in children have been treated the same way for the past thirty years, without any progress in treatment in that time.
“It's a people's problem, so we need to help with funding and one day a cure until enough noise is made for someone to intervene.”
“We are fighting to raise awareness while he is still with us and we will continue to do so in his memory.”
Hugo was just eleven weeks old when a tumor the size of a golf ball was found in his brain in September 2022.
He was diagnosed with atypical teratoid Rhabdoid Tumou, a rare, malignant and aggressive brain cancer, and given a 10 percent survival rate.
He started chemotherapy and by December the tumor had shrunk by 80 percent.
Hugo underwent three rounds of 40-day chemotherapy with three times the toxicity he originally had, while in intensive care as well as suffering from seizures and infections.
Ollie and Brooke marked the six-month anniversary of their hospital stay on April 4 by celebrating Hugo completing his treatment.
By then, the tumor has shrunk by 98 percent. The remaining two percent were resistant and would kill Hugo within months if left unattended.
Ollie and his partner Brooke are now on a mission to raise awareness and funds for childhood brain cancer, which will continue after their terminally ill son Hugo passes away
Hugo's brain will also be donated to research in the hope that a cure will one day be found
Hugo has been hospitalized eight times with infections and other complications since returning home in April.
Two weeks ago his parents suffered the cruelest blow that this Christmas would be Hugo's last.
“We were absolutely devastated and cried for days – we still do,” Mr Long said
“It's a very difficult situation when you're about to lose your child in a way that no one would expect and there's no remedy.”
“You feel so helpless and you wish you could do more.”
Hugo is a smart and cheerful toddler who, despite the death penalty, loves the beach and playing with his dogs.
“He's learning to walk, babble and do everything any other toddler would do,” Mr. Long said.
“There's just a time bomb in his brain that could go off at any moment.”
“He taught us how strong he can be and how to live every moment to the fullest.”
Go to Hugo Long Fellowship Fund for more details. You can also follow Hugo's journey My sun warrior.
Brooke and her son Hugo spent Christmas Eve making playdough creations
Little Hugo spent more than a third of his young life in the hospital