PURPLE may not be used in Ballarat Clarendon College’s uniform, but students and teachers donned a splash of the colour to raise money for Sanfilippo Syndrome on Wednesday.
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It is one of many ways the school will raise money for research into the rare disease, which has attacked teacher Mark Robson’s five-year-old daughter Skye.
On Monday there was a bake sale, Tuesday a sausage sizzle, Wednesday a touch of purple and nail panting, Thursday a staff versus students’ soccer match and on Friday prizes from the raffle will be drawn and funds tallied.
School head of community service Jenny Tischler said the school supported things close to home and the community, and students had pushed for something to be done relating to the disease.
Skye’s life expectancy is between 12 and 20 years, with the degenerative fatal disease in its initial stages. Later it will go into a hyperactive phase, before a breakdown phase. The final funds count will be on Friday, but Ms Tischler estimated hundreds of dollars had already been raised.
She said the college had chosen a touch of purple as purple was the colour used for rare diseases.
“Rare Disease Day was celebrated on February 28, which was a Saturday – which didn’t suit us at school, so we decided to do something now,” she said.
Ms Tischler said the main aim of the week was to raise awareness for Sanfilippo syndrome and hoped the whole school would know and understand something about it by the end of the week. The Robson family has set up a fundraising campaign, Hope for Skye, to help fund gene therapy that could potentially extend Skye’s life.
Mr Robson said they were blown away from the level of support all week.
“Hopefully, this will help find a cure for Skye and help others with the rare disease.”
nicole.cairns@fairfaxmedia.com.au
