We have endured the unimaginable heartbreak of losing a baby because of SMA. 

Bella was born April 28, 2021 in Ballarat. She was thought to be healthy at birth until 24 hours after delivery she had limited movement in her arms and legs. We were transferred to Monash Children's Hospital and painstakingly watched Bella fight to live, enduring test after test, MIR scans and operations. After 15 days she was diagnosed with SMA. On May 18, 2021, at 20 days old, Bella passed away in hospital in my arms with her dad, brothers, and sister with her. 

When detected early, SMA can be treated before irreparable damage is done, leading to a drastically improved quality of life. Those affected become trapped inside their bodies unable to move. Eventually, the affected child (often babies) struggle to swallow making eating difficult. Eventually the child loses the ability to breathe on their own.
 
If Bella had been born in NSW or the ACT, where SMA is routinely tested for on the NBS she would have been diagnosed from a simple heel prick and our story could have been a lot different. 

We want SMA added to the NBS test in Victoria, so that future babies like Bella have a chance of living a normal life. SMA is the leading genetic cause of death in Australian infants under the age of two, with one in 35 Australians carrying the gene for SMA.

We are calling on the Victoria State Government to include screening for Spinal Muscular Atrophy (SMA) in routine New Born Screening (NBS) at birth. This is a simple heel prick test that costs $10 per baby and save babies lives and future heartbreak. 

Please support our campaign by signing and sharing.

From the bottom of our hearts, thank you Emma , Adam , Bailey , Chase , Nellie and Lewi.