‘MAKING SOME NOISE’ FOR GOLDIE
WHEN you receive traumatic news, Simon Digby says you can either curl up in a ball or “make some noise to create awareness”.
After learning their daughter Goldie, now 5, suffered from a rare, genetic neurodegenerative disorder, he and his wife Cristina chose the latter. They successfully petitioned Health Minister Greg Hunt when a promising trial was halted over funding issues, securing enough money for a year’s supply of the drug for 40 Australian children with ataxia-telangiectasia.
The disorder affects co-ordination, including the ability to walk and eat, and makes children extremely vulnerable to infection. Those with the disorder rarely live past 25.
But Mr Digby is optimistic for the future and wants to raise enough money to secure trial drug supplies beyond the 12 months. To help, Melbourne chefs Ian Curley, Shane Delia and Adam D’sylva have created a custom menu for a black-tie fundraiser, executed by Maha restaurant’s Nick Korceba, with dessert from Piccolina’s Sandra Foti.
From Sneaky Sound Systems’ offer to perform, to donations for an auction flying in from around the world, Mr Digby said everyone helped. See goldiesangels. com.au to contribute.