Matthew Shepherd lost his son to brain cancer nearly two years ago. This weekend he will walk alongside over a thousand Brisbane residents to remember Hugo and raise awareness and much needed funds for cancer research.
“We weren’t really aware of brain cancer at all until it hit us head on,” Matthew says.
It was during a family holiday that Hugo, just shy of his 17th birthday, began complaining of headaches and was unusually sleepy.
“We took him to the hospital for them to have a look at him, suspecting he might have a virus and within about an hour they had shipped him from Yamba Mclean Hospital down to Grafton Base hospital and he had an X-Ray/ CT scan there. They scanned him and identified a brain tumour.”
Hugo was diagnosed with glioblastoma multiforme (or GBM), one of the most aggressive tumours with an extremely low survival rate.
“So we went on this learning curve and discovered that eight out of 10 people that get the disease wont survive. And it’s the biggest killer of children, which is another thing we had no idea about,” Matthew says.
It’s this lack of awareness, and of advancements in technology surrounding the disease, that Matthew believes need to be tackled.
Following his diagnosis, Hugo Shepherd lived the remainder of his 14 months to the fullest, managing to pass Year 12, and attending school formals and his valedictory even after he lost control of his limbs.
“The day he passed away we actually got the letter from the University of QLD offering him a position at the uni,” Matthew remembers. “He died two days short of his 18th birthday.”
At Hugo’s funeral, a close friend and mentor of Hugo’s spoke to Matthew about his father, who had been diagnosed with the same strain of brain cancer 12 years prior.
“What he couldn’t understand is why in all that time, 12 years, there had been no advances in treatment. Hugo had exactly the same treatment given to him that was being delivered 12 years earlier and the same treatment is going around today.
“There is nothing new happening in this area at all and I don’t understand why that’s the case.”
Along with Hugo’s younger brother, his family and school friends will join Matthew this Sunday 25 October for the Walk4BrainCancer in New Farm Park. Hugo and other victims of brain cancer will be honoured and all funds will be put towards research for Cure Brain Cancer Foundation and Brisbane’s Newro Foundation.
Through funding for innovative research and accelerated new treatments, Cure Brain Cancer Foundation hopes to achieve its mission of increasing the five-year brain cancer survival rate from 20 per cent to 50 per cent by 2023.
Catherine Stace, Chief Executive Officer at Cure Brain Cancer Foundation, points out how critical funding for research is to achieving breakthroughs in the disease.
“Cure Brain Cancer is challenging the status quo of brain cancer and helping to drive the biggest ever push to bring quality clinical trials to Australia. This has the potential to radically change outcomes for patients,” she says.
“But research needs funding and none of this could be possible without the determination and support of local communities, who rally behind Walk4BrainCancer. Every dollar raised propels us closer to increasing the survival rate of brain cancer and accelerating lifesaving treatments for patients.”
The Shephard family became involved in Walk4BrainCancer shortly after Hugo’s diagnosis, and are extremely passionate about the organisation.
“We went along to their very first walk because it was just after Hugo got sick. So he did the first walk with us walking, he did the next walk with us in a wheelchair, and the third walk we did without him, and we will keep doing it.
“If we can keep raising money and one day save one child’s life, or extend one child’s life, then that’s something worth committing to.”
Walk4BrainCancer is run annually across the nation, with a five kilometre walk that caters for all levels and ages and is suitable for wheelchairs and strollers. The Brisbane walk will be held at New Farm Park from 8-11am this Sunday 25 October. For more information, visit Walk4BrainCancer.