SOUTH-west charity the Leila Rose Foundation has taken a major step by appointing its first employee to help case manage families facing rare cancer in children.
The foundation was set up in memory of Warrnambool girl Leila Rose Chow, who died aged 21 months in 2010 after being diagnosed with rhabdoid tumour.
The appointment of an advocate to assist families with medical information and locating city-based accommodation is a significant milestone for the charity. Leila’s father and foundation director Dr Andrew Chow said the part-time advocate had been secured after several donations from the Jones and Uebergang foundations.
“We’re trying to get funding full-time but this is a major step for our foundation,” Dr Chow said. “We know that when families are being told bad news by doctors and health professionals they don’t take everything away with them.”
Dr Chow said demand on the health system meant many specialists did not have the time to find the research on rare cancers themselves.
“And when you’re talking about rare cancers you’re looking at a handful of experts in the world who will know about it. The advocate is there to look up that information.”
South West Credit will hold a small fund-raiser this week at its Lava Street office.
Branch manager and foundation fund-raising coordinator Helen Boyd said the business was keen to support the cause.
“The Leila Rose Foundation receives no government funding and relies totally on local fund-raising, so we hope the community really gets behind it,” Ms Boyd said.
The morning tea and raffle will be held from 10am on Friday.