By LACHLAN MOORHEAD
FIVE years ago Khush and Robert De Rose received news that no parent should ever have to hear.
Ms De Rose described the day she learned her daughter, Isabella, had an incurable brain tumour known as a diffuse intrinsic pontine giloma (DIPG), as “the day my life and my husband’s changed forever”.
Isabella died six months later in August 2008 at six years of age.
“I remember the news made me feel like I was having an out of body experience.
“I had to reconcile in my head that my child was going to die soon,” Ms De Rose, from Endeavour Hills, said.
“It’s looking at your child and knowing you have very little time on your hands.”
In the wake of this tragedy, the De Roses ensured Isabella’s death became a legacy through starting the Isabella and Marcus Paediatric Brainstem Tumour Fund – named after their daughter and another child who was taken by the same cancer.
The charity has recently been selected as a beneficiary for the Upstream 50km Challenge charity event in November.
“Rob and I felt it would be a crime not to do something about this situation,” Ms De Rose said.
“We toyed with the idea of charities and in 2009 we received a call from a nurse who told us of another mother whose son had died from the tumour.”
The other child was Marcus Roberto, whose parents Tony and Daniela have joined the De Roses in their efforts to raise awareness and fund research into the poorly understood cancer, which claims the lives of 10-15 Australian children each year.
The two families have worked tirelessly in raising the profile of the deadly tumour through various fundraisers and enlisting the help of celebrity advocates, including NBA basketballer Andrew Bogut who went to the same primary school as Isabella – Thomas Mitchell in Endeavour Hills.
The upcoming Upstream 50km walk begins at the Docklands and follows the Yarra River all the way to Donvale, with proceeds helping to fund a PhD scholarship at Monash University for research into DIPG.
Ms De Rose said the launch for Upstream, held at Etihad Stadium last month, was a success and proved how far the Isabella and Marcus fund had come in only a few years.
“We were very happy with the launch, we learned about the other beneficiaries and we were inspired by them,” she said.
“People were coming up to us and saying “we never knew such a disease existed”.
But now they do, and the De Roses hope that in time a lot more will as well.
For more information about the Isabella and Marcus Fund visit www.IsabellaAndMarcusFund.org.au, and for more information on the Upstream Challenge visit www.upstreamfoundation.org.
