'We don't know how much longer we'll have her. But whatever it is, we'll take it'

By Kate Aubusson, Louise Kennerley
Updated September 11 2017 - 9:43am, first published September 6 2017 - 9:33am
Bethan McElwee and her husband Johnny McElwee with their daughter Aviana McElwee on her first birthday. the Family enjoy a picnic at sunset at Cassuarina Beach, Darwin, NT. Aviana has Spinal Muscular Atrophy (SMA) Type 1 which has a life expectancy of 1 to 2 years.  7th July 2017. Photo: Louise Kennerley SMH story by Kate Aubusson
Bethan McElwee and her husband Johnny McElwee with their daughter Aviana McElwee on her first birthday. the Family enjoy a picnic at sunset at Cassuarina Beach, Darwin, NT. Aviana has Spinal Muscular Atrophy (SMA) Type 1 which has a life expectancy of 1 to 2 years. 7th July 2017. Photo: Louise Kennerley SMH story by Kate Aubusson
Jonathan McElwee and Bethan McElwee with their 1-year-old daughter Aviana, who visited Parliament House in Canberra for a Spinal Muscular Atrophy Australia event, on Wednesday 16 August 2017. fedpol Photo: Alex Ellinghausen
Jonathan McElwee and Bethan McElwee with their 1-year-old daughter Aviana, who visited Parliament House in Canberra for a Spinal Muscular Atrophy Australia event, on Wednesday 16 August 2017. fedpol Photo: Alex Ellinghausen
Bethan McElwee and Jonathan McElwee with their 1-year-old daughter Aviana, who visited Parliament House in Canberra for a Spinal Muscular Atrophy Australia event, on Wednesday 16 August 2017. fedpol Photo: Alex Ellinghausen
Bethan McElwee and Jonathan McElwee with their 1-year-old daughter Aviana, who visited Parliament House in Canberra for a Spinal Muscular Atrophy Australia event, on Wednesday 16 August 2017. fedpol Photo: Alex Ellinghausen

The Tragedy of Baby Aviana: click here to read more ???