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A tale of two states: Family devastated as Queensland’s newborn screening fails daughter

John Stanley
Article image for A tale of two states: Family devastated as Queensland’s newborn screening fails daughter

Two baby girls, both named Oakley and born with the same condition, are destined to lead entirely different lives, simply due to the state in which they were born.

Brisbane parents Kate and Grant Gough received news their daughter had spinal muscular atrophy (SMA) just eight weeks after she was born, when it was already too late.

A lifesaving $10 newborn test, available in New South Wales but not Queensland, diagnoses the condition.

“If they’re picked up at birth, that can actually delay or prevent any damage,” Kate told Olympia Kwitowski.

“Our Oakley … wasn’t meeting her milestones.

“Whereas in direct comparison, Oakley in New South Wales is meeting all of her milestones because she was given this treatment, she was picked up at birth.”

Kate told Olympia she didn’t know how long her daughter Oakley would live for, but was initially told six months.

But despite writing to the Queensland Health Minister on numerous occasions, no action has been taken.

Press PLAY below to hear the full interview

For more information, visit the Move for Oakley website.
Image: Getty

John Stanley
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