Spinal Muscular Atrophy to be added to the Newborn Bloodspot Test in WA.

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Spinal Muscular Atrophy to be added to the Newborn Bloodspot Test in WA.

This petition made change with 10,935 supporters!

Rosie was born on the first day of the year in Albany Hospital. A perfect little New Year gift and the second child for our family. Within just a few short weeks, we noticed Rosie wasn’t moving as much and her breathing was more laboured and rapid. At 6 weeks of age she was diagnosed, through a blood test, with Spinal Muscular Atrophy (SMA) Type 1. Unfortunately, even in 6 short weeks, Rosie had lost significant amounts of movement, leaving her with irreversible disabilities. Had Rosie been born in NSW, for example, where SMA is routinely tested for on the NBS, she would have been diagnosed pre-symptomatically and our story could have been a lot different. 

SMA is a neuromuscular disorder, similar in its effect to motor neuron disease in adults, which results in the loss of motor neurons – the nerves in the brain stem and spinal cord that control muscle activity such as breathing, swallowing, speaking and movement. Deterioration of motor neurons causes muscles to weaken and waste away leading to atrophy.

The first areas to be affected are the muscles closest to the trunk, the upper arms, shoulders, hips, back and upper legs. Those affected become trapped inside their bodies unable to move. Eventually, the affected child (often babies) struggle to swallow making eating difficult. They cannot cough and move mucus from their respiratory system which means even a simple cold is a serious illness, often requiring hospitalisation. Eventually the child loses the ability to breathe on their own. It is a devastating disorder for both the child, who suffers from it, and for the families and the medical staff who care for the child.

This condition should be on the NBS. 

At just five and a half months old, Rosie took her final breath. 

Help us enact change in Rosie’s name and prevent any other sweet babies from going through what Rosie did and any other family from experiencing this heartache �

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This petition made change with 10,935 supporters!

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