A devastated family are fighting for screening measures to be rolled out in Queensland after their baby girl was diagnosed with a deadly disease.
Little Oakley Gough's life could have been very different if she lived in New South Wales, where babies are tested for a rare condition called Spinal Muscular Astrophy.
If detected at birth, a baby with SMA can be treated and go on to live a relatively normal life.
But the five-month-old was not diagnosed immediately as she was born in the Sunshine State, and the damaging symptoms had already set in - leaving her relying on a ventilator and feeding tube to stay alive.
Now her parents Kate and Grant have launched a petition demanding the state government introduce a $10 newborn heel prick test to help save other children.
Kate and Grant Gough (pictured with their daughters Arabella, two, and Oakley, five months) have launched a petition calling on the Queensland government to fund Spinal Muscular Atrophy heel prick tests for newborns
'We were gutted,' Ms Gough told Daily Mail Australia.
'We are originally from NSW so Oakley’s life could have been completely different if we lived a couple of hours south.'
'To learn that the knowledge, science and evidence all exist to provide newborn screening and presymptomatic treatment, yet this isn’t currently happening in Queensland, just broke our hearts.'
SMA is a rare infantile version of motor neurone disease that causes muscle weakness and respiratory failure.
Motor neurons, nerve cells that send electrical outputs to muscles, then decay, and muscles waste away, eventually resulting in death.
Oakley has SMA type 1, the most severe form of the disease, which most sufferers do not survive past the age of two.
When she was born, the doting parents were told she was a perfectly healthy little girl, only to find out weeks later she had a fatal disease and, without treatment, would not make it to six-months old.
'We have been told that Oakley won’t walk and it is unlikely that she will be able to come off the machines she requires for both feeding and breathing support,' Ms Gough said.
'Our greatest fear is that her precious little life is cut tragically short and that she won’t get to live a long and healthy life like babies do just south of the border.
Oakley Gough was recently diagnosed with Spinal Muscular Atrophy, leaving the infant reliant on a feeding tube and breathing machine
'If Oakley does live a life longer that a few years it will be very tough for her, both physically and emotionally.'
In a cruel contrast, a little girl with the same name was born in NSW just three months earlier and is thriving after receiving early treatment.
Oakley Atkins, from the Hunter Valley, was diagnosed with SMA at one-week-old after being given a heel prick test.
Her parents Karah McLeod and Jack Atkins said their little girl is now doing extremely well and meeting major milestones.
The Goughs, who connected with the Atkins after learning about their similar circumstances, said they had never heard of SMA and do not have any family history.
They are now focusing their energy into bring about change to ensure other families do not have to suffer the same heartbreak.
'We aren't doing it for us, we are doing it for the next family that has absolutely no idea what's about to hit them,' Mr Gough said.
NSW currently tests newborns for SMA unlike Queensland. If diagnosed early, babies with SMA can be treated and live relatively normal lives
The estimated cost for the Queensland government to add SMA to the newborn screening test would be $640,000 each year - or $10 per baby.
Once the irreversible symptoms take effect, parents desperate to save their children are often forced to fork out millions of dollars for life-prolonging drugs, which are typically only accessible overseas.
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.
A GoFundMe campaign has been set up to support the Goughs and cover treatment as they work to raise $3.3million for gene therapy to give Oakley the best quality of life possible.
So far, the fundraiser has reached $41,815 of its $150,000 goal as the community rallies around the Brisbane family.
'While our hearts have been broken, they have also been warmed over and over by the amazing amount of support, kindness and generosity we’ve received from our family and friends,' Ms Gough wrote.
'We are thankful to not be in this fight alone.'
WHAT IS SPINAL MUSCULAR ATROPHY?
Source: Spinal Muscular Atrophy Association of Australia