Butler school raises funds for rare condition

BUTLER Primary School held a free dress day this term to raise funds for a rare condition that has affected a local family.

Principal Julie Woodhouse said May was Prader-Willi syndrome awareness month and one of the school’s families faced the challenge of having a child, Skyla May, diagnosed with the syndrome.

“Prader-Willi syndrome (PWS) affects every aspect of the person’s life,” Mrs Woodhouse said.

“Their brains struggle to regulate every aspect of their body.

“With a life expectancy of less than 30, they have global developmental delays, challenging behaviours, mental illness and, the hallmark feature of the disease, a feeling of relentless hunger.

“Without very careful management, this leads to morbid obesity and early death.

“These children are also fighters with giant hearts – the strength, resilience and courage they show each and every day to do things that most children take for granted are remarkable.”

The school held a Wear Orange for PWS Day on May 30 and raised $700 through gold coin donations for the Prader-Willi Research Foundation of Australia, a not-for-profit organisation run by parents of children with the condition.

The foundation has a two-pronged approach to finding treatments – in the short term to identify and fund projects to mitigate the most crippling symptoms and to improve quality of life, and in the longer term, to develop a genetic treatment.

Mrs Woodhouse said teachers incorporated relevant activities into their learning program so students had an understanding of why they were raising money.