Rob and Khush De Rose from Endeavour Hills read a book written by their daughter Isabella, who died from a rare tumour at the age of 6. 53239 By Kelly Yates
THE parents of Isabella De Rose have set up a charity fund in the hope of raising money for research into the rare brain tumour that killed their six-year-old daughter.
Isabella, known by her family as “Bella”, lost her life to Diffuse Intrinsic Pontine Glioma (DIPG) in 2008, a tumour which occurs in the brainstem and is mostly found in children aged between five and nine.
The tumour progressively robbed Isabella of her motor functions, causing permanent double vision, paralysis, loss of speech and her capacity to swallow and breathe.
Six months after Isabella’s diagnosis, she took her last breath lying between her parents Rob and Khush at their Endeavour Hills home.
The couple have joined forces with Daniela and Tony Ruberto, a couple who also lost their child Marcus to the same type of tumour, to set up the Isabella and Marcus Fund.
The two families were brought together by their tragedies.
Mr and Mrs De Rose are hoping to establish a research laboratory in Australia to develop treatments for DIPG and ultimately find a cure.
They are calling on the State and Federal governments to show their support to the idea.
“Most children die within a year of diagnosis,” Mrs De Rose said.
“Research has improved the prognosis of many children’s cancers but there has been no progress in the treatment of DIPG in the last 30 years. The only treatment available is radiotherapy, which prolongs life by months if the tumour is responsive. Currently, there is no research in Australia.”
Many local schools have already jumped on board to help raise some much-needed money for the fund.
Thomas Mitchell Primary School in Endeavour Hills, where Isabella started her schooling years, is holding a free dress day today (Thursday) and will donate all of the money raised to the Isabella and Marcus Fund.
Mrs De Rose said Isabella was the last piece in the jigsaw that was her family.
“She wanted to be a scientist, like her dad, and at age five was already a reservoir of knowledge,” she said.
“This was evident in the way she tackled her illness. She wanted to be in control and knew her medications and how to pronounce them.”
The Isabella and Marcus Fund is a sub-fund of the Melbourne Community Foundation, a not-for-profit organisation, which administers the fund.
Donations over $2 are fully tax deductible. For details, visit www.isabellaandmarcusfund.org.au
