Luke Gosling (Solomon, Australian Labor Party) Share this | Hansard source

Last week I met an amazing Darwin mum and her daughter Aviana. Aviana is a gorgeous, happy and inquisitive almost one-year-old bub. She slept well in her early months and had what her parents called a calm nature, but her parents have been a bit concerned about a flat spot at the back of her skull. They later learnt from Aviana's paediatrician that this was a tell-tale symptom of spinal muscular atrophy, SMA. It is a terminal condition and there is no cure. As her parents say, it is the cruellest situation possible to know that Aviana will waste away. It is heartbreaking. However, there is a glimmer of hope: a clinical trial of a medication that can slow down the progression of SMA. Aviana has received some incredible medical care and, on behalf of her parents, I want to thank the health professionals involved. Aviana has been able to access the new treatment, a miracle drug as her parents call it, but not all SMA families have access to it. So, Aviana's parents, even though it is too late for their precious child, want other families to make sure that the carrier testing of the parents is done so that they know the risks, the newborn screening for SMA is done and there is more awareness and more training for medical professionals. My heartfelt wishes go to Aviana and her courageous parents. I hope members will join me to help raise awareness and treatment of spinal muscular atrophy.

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