Dion Detterer is a self-confessed nerd, a Star Wars aficionado who for the past few years has been tackling a PhD in computational biology to find answers for “people with diseases that defy genetic explanation”.
But right now, the 39-year-old’s focus isn’t on completing his doctorate, it’s on staying alive.
“I just want to live my life, stay alive and contribute to the community,” said Mr Detterer, whose head is rotated 80 degrees to the left and whose arms are permanently bent inwards.
Mr Detterer was born with Ullrich congenital muscular dystrophy, a genetic condition that has caused his muscles to weaken and waste. When he was 25, he suffered a brain haemorrhage and was moved to full-time ventilation via a tracheostomy.
He didn’t let his disabilities stop him from walking his own “hero’s journey” a la Star Wars – receiving a university medal, starting a PhD, and marrying Estella, a full-time chef.
In 2003, the NSW government granted him a care package that included 24-hour care by registered nurses. But two years later, the nurses were replaced with unqualified support workers, and Mr Detterer said the standard of care deteriorated to the point he now believes his life is at risk.
With the NSW health system already accounting for nearly a third of the state’s budget, his situation raises uncomfortable questions about how to balance the unquestionable needs of an individual with those of the wider community.
Mr Detterer said there were large gaps in the 24-hour roster and alleged some of the Southern Cross-employed support workers had behaved inappropriately, allegedly drinking alcohol prior to a shift, smoking marijuana, and even asking his wife for a massage.