Rosie’s gift to new-borns in WA
Member for Roe and Deputy Leader Peter Rundle has welcomed the introduction of the Spinal Muscular Atrophy (SMA) heel prick test into the State’s health system.
In 2021, Mr Rundle raised Katanning family Rachel and Michael Dark’s devastating experience in Parliament and called for the State Government to make the $10 test available in WA.
“Rachel and Michael suffered the heartbreaking loss of their 5-and-a-half-month-old daughter Rosie from the genetic condition which would have been discovered through testing when she was born,” Mr Rundle said.
“If Rosie had been tested and diagnosed using the heel prick test which every newborn receives, she would have been treated with drugs which would have allowed her to live a normal life.
“SMA affects approximately one in every 10,000 newborns and cannot be detected by a Harmony test, which is why I delivered the grievance in Parliament, along with a petition containing more than 9,500 signatures, asking for the test to be included in the Newborn Bloodspot Screening program.”
Mr Rundle said the announcement of the simple SMA test being introduced into the State’s health system, at a cost of roughly $300,000 per year, was welcome news.
“I’d like to acknowledge Rachel and Michael for their amazing commitment to bringing this issue to light,” Mr Rundle said.
“I’d also like to thank former Health Minister Roger Cook and his Department for their work, and current Minister Amber-Jade Sanderson for ensuring this request didn’t lapse.”
Mr Rundle said Rachel, Michael, and their families knew that little Rosie’s legacy would make a big difference to many West Australian families.
“Rachel and Michael’s advocacy for this test to be included in the NBS program has led to a wonderful outcome,” Mr Rundle said.
“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.”
Rachel and Michael have welcomed little Charlie to their family, a younger brother to Tom. To quote Rachel, “We did it, Rosie. You’re going to save so many lives baby girl.”