Rick Wilson (O'Connor, Liberal Party) Share this | Link to this | Hansard source

I rise today to give a big shout out to an amazingly resilient young mother from my home town of Katanning. Rachel Dark and her husband, Michael, have endured the sort of grief that no parents should have to go through, losing their beautiful baby, Rosie, to a rare genetic disorder called spinal muscular atrophy, or SMA. Rosie was born with no indication of this disease that would progressively ravage her little body, leading to her death at only 5½ months of age. In the weeks and months since Rosie's passing, grieving mum, Rachel, has campaigned tirelessly to have this genetic condition included in a suite of diseases tested in the newborn bloodspot screening, or heel prick, test—which you are well aware of, acting Deputy President Freelander.

This simple test, costing approximately $10, would have led to an early diagnose of SMA for Rosie and pre-emptive treatment which could have proved not only life saving but led to her living a relatively normal life. Instead, by the time Rosie started to lose the use of her arms and legs, and the diagnosis was made, her disease was too well progressed. While potentially life-saving drugs, like SPINRAZA, have recently been listed on the PBS, unfortunately these are not able to reverse the paralysis that ultimately cost Rosie her life.

Although grieving, Rachel has bravely resolved to lobby her state and federal MPs to make sure that no other WA family will endure this tragic loss. After hearing her story, I wrote to WA health minister, Roger Cook, requesting that WA align with the ACT and New South Wales health protocols, which include SMA testing in their NBS testing of newborns. Although Minister Hunt has publicly advocated for all states and territories to adopt the SMA testing, I shared the story with him as well. In a win for common sense and compassion, Minister Cook has announced SMA would be included as a pilot in the WA MBS program going forward. It won't bring baby Rosie back but her legacy will be the lives that this simple test saves in the future. Rachel and her husband are both carriers of the recessive SMN1 gene, which means there is a 25 per cent chance of having another baby with SMA. One in 45 people carry the gene for SMA, and, undiagnosed and untreated, it is the most common genetic disorder leading to death in babies under two years of age.

I close by offering my heartfelt gratitude to Rachel and her husband, Michael, and to all the families who have taken up the fight to secure Australia-wide access to SMA testing through the MBS. I'm proud to support Rachel's ongoing quest to persuade other states and territory governments to add SMA to their MBS screening. Australia-wide adoption of this simple, cheap and effective screening test will provide confidence for all parents into the future and will be a lasting legacy for those precious little lives lost.

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

Rosie's parents have been in contact with me and are trying to get a national program.