Parent’s advocacy results in broader WA infant screening program

Katanning parents Rachel and Michael Dark have welcomed the recent announcement the Spinal Muscular Atrophy heel-prick test will be included in the WA Newborn Bloodspot Screening program following the tragic loss of their daughter Rosie. “We did it, Rosie. You’re going to save so many lives, baby girl,” Mrs Dark said. SMA encompasses a range of hereditary diseases that affect motor neurons in the brain and spinal cord. The conditions screened for by the Newborn Bloodspot program vary across Australia’s States and Territories. Following the devastating loss, Mr and Mrs Dark advocated for the inclusion of the heel-prick test in WA. Deputy Opposition Leader Peter Rundle raised the issue in Parliament in 2021 and urged the WA Government to include the heel-prick test in the WA infant screening program. “SMA affects approximately one in every 10,000 newborns and cannot be detected by a Harmony test,” Mr Rundle said. “Which is why I delivered the grievance in Parliament, along with a petition containing more than 9500 signatures, asking for the test to be included in the Newborn Bloodspot Screening program. I’d like to acknowledge Rachel and Michael for their amazing commitment to bringing this issue to light. “Rachel and Michael’s advocacy for this test to be included in the NBS program has led to a wonderful outcome. “Families around the State can now be confident in the knowledge this terrible genetic condition can now be diagnosed very early in a baby’s life.” Mr Rundle also thanked the former health minister Roger Cook and current Health Minister Amber-Jade Sanderon.