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‘Knife to heart’: Family’s fight after denied $10 test – Whitsunday Times

They are both called Oakley, and they were born with a rare condition. Geography – and access to a $10 test – will explain why they will live different lives.

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Geography has played a tragic part in why two little girls called Oakley with the same devastating motor neurone disease will live very different lives.
A simple $10 newborn heel prick test for spinal muscular atrophy is offered to new parents in NSW but not in Queensland.
If diagnosed early, before symptoms appear, the disease can be managed with a drug called Sprinraza and children can thrive.
Without the test, a later diagnosis means the damage to motor neurons cannot be reversed and the children…

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