THE chance to eat normally could be the long-term result of a musical fund-raiser aimed at fighting a rare genetic disease which restricts the diet of sufferers.
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Phenylketonuria (PKU) involves those affected being unable to break down the amino acid phenylalanine, leaving them vulnerable to brain damage if they don’t regulate the amount of protein they consume.
Beechworth nurse Justine Inglis, who was born with the disease, has organised Playing for a PKU Cure, a concert at Ovens’ Happy Valley Hotel from 10am to 10.30pm this Saturday.
“It’s about raising awareness because if you say you’ve got PKU not many people know what it is,” she said.
It is also about fund-raising, with Ms Inglis aiming to gather $2000 for Sydney doctor John Christodoulou, who is trying to develop an enzyme which would breakdown the phenylalanine.
Asked what a cure would mean, an emotional Ms Inglis said “I don’t even know whether I could put it into words”.
“It would mean everything to me, I would know what it would be like to be normal, to have the freedom to eat what I wanted to eat, knowing that I wouldn’t be slowly damaging my brain by poisoning it with what I was eating.”
Saturday’s fund-raiser will include performances from Tracey Hamilton, Wille Golightly, Terry Lockwood and Rudi Katterl.
Those who can’t attend but want to donate can visit the website give.everydayhero.com/au/juz-nikki-pku-fundraiser-2014.
