General
Parents call for nationwide screening for deadly muscle-wasting Spinal Muscular Atrophy
Oakley Gough is not the first baby to miss out on a newborn health test that could have prolonged her life, but her parents hope she will be the last.
Key points:
- Spinal Muscular Atrophy can be diagnosed in newborns with a $10 test
- Newborns are screened for SMA in NSW and the ACT
- Qld parents are campaigning for SMA screening nationwide
Six-month-old Oakley was diagnosed with Spinal Muscular Atrophy (SMA) at eight weeks old when she lost the ability to breast or bottle feed and was fitted with a nasogastric tube.
SMA is the childhood version of Motor Neurone Disease and, over time, results in the muscles wasting away.
Babies diagnosed with SMA Type 1 (Oakley’s classification) are given a life expectancy of two years, or less than six months…
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