A devastated family has launched a petition demanding the Queensland government start offering parents a simple test for a genetic condition after their baby was diagnosed with the deadly disease.
The simple $10 newborn heel prick test for spinal muscular atrophy (SMA) is offered to newborns in New South Wales but not in Queensland.
Watch the full Sunrise report on the different outcomes in the video player above
Stream Sunrise free on 7plus 
If detected at birth, a baby with SMA can live a relatively normal life - but if left untreated, the consequences are often fatal.
In a cruel coincidence, two babies with the same name were diagnosed with the condition last year, but due to their birthplaces, they are facing very different futures.
Oakley Atkins from NSW was diagnosed at one-week-old after taking the heel prick test and is thriving after receiving treatment.
However Oakley Gough, a Queenslander, did not have the test for months, by which point the damage was done.
She is now fed through a tube and needs an oxygen machine to stay alive.
Her dad, Grant Gough, told Sunrise he felt “anger” initially which quickly “turned into sadness” after hearing the devastating news.
“To think that she could have lived an almost normal life and now she’s got no chance of that,” he said.
“We’re hopeful that we’ll get as long as possible with her,” mum Kate added.
The distraught family has now launched a petition calling on the Queensland Government to fund the SMA test, at an estimated cost of $640,000 each year.
That’s just $10 for every precious baby.
“It can happen to anybody, we have no family history, we’d never heard of SMA before, we want to make sure that people can jump on and support Oakley in her cause and so Oakley’s life can make a difference for future babies,” Kate said.
A spokesperson for Queensland Premier Annastacia Palaszczuk told Sunrise the state’s health department was “still assessing the trials.”
“With medical treatments constantly evolving, we will always look at new technologies if it means better health outcomes for Queensland children,” they said.
Stream free on
