Eleven-year-old Jaxon Cooper was a dreamer with an extensive bucket list, but the most important item on it was a wish that a cure for a deadly childhood brainstem cancer would be found.
Tragically, Jaxon never saw this dream realised: he passed away in December 2015 from that same cancer, DIPG, 22 months after his diagnosis.
But his family have not given up on making his wish a reality, and next weekend will take part in the one-day, 20-kilometre Upstream Challenge walk in Melbourne.
They are raising money for the Isabella and Marcus Fund to provide PhD scholarships to bring more scientists into childhood brainstem cancer research, and Very Special Kids, the provider of the only children’s hospice in Victoria and the place where Jaxon spent his final days.
DIPG, a cancer of the brainstem, has no cure, and fewer than 10 per cent of children survive for two years.
It is a particularly cruel disease, as children affected lose even the most basic of functions, including the ability to talk, swallow and move.
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Surgery is currently impossible and treatment options have changed very little in decades.
Jaxon’s mum Jodie Cooper said with a cancer diagnosis, it was expected there would be a chance to fight it, but with her son’s diagnosis, there was “not even a tiny bit of hope”.
“It was a slap in the face,” she said.
But Jaxon still wanted to be the first child to beat the disease and the Isabella and Marcus Fund, with its mission to support research into causes and treatments, resonated with him.
Mrs Cooper said he was a curious boy who always wanted to know the whys and the hows, so it was frustrating for him that no one yet knew the cure.
As well as fulfilling his dream, Jaxon’s family are also spurred on by a desire to prevent another child and family suffering the same pain.
“You don’t want any other kid to go through that,” Jaxon’s grandmother Viv Cooper said.
Jaxon’s family said he was a spirited, ambitious boy, with a wicked sense of humour.
“He was an amazing little boy; he kept his humour right up to the end,” his aunt Olivia Higgins said.
Jaxon’s family will hold a barbecue at the Champions Long Gully IGA on Saturday, November 4 from 10am to 2pm to raise funds for their causes.
Donations can be made online by searching for ‘Team Jaxon’ at the Upstream Foundation website.