Statement from Laura Gerber, Shadow Assistant Minister for Justice
The announcement that screening for Spinal Muscular Atrophy (SMA) will be funded in Queensland is a win for families who have been campaigning for this for years.
I’d like to thank and acknowledge those families who have been a loud voice fighting for this cause.
SMA screening should have been funded years ago.
It would have saved lives.
It has been funded in other states but not in Queensland and infants have passed away and others diagnosed too late as a result of the Queensland Government’s inaction.
SMA if detected at birth can be treated and children can live a relatively normal life.
Unfortunately, that has not been the case for many Queensland babies, like baby Mia, who was just six months old when she succumbed to SMA.
Mia’s mother Jessica has today asked me to issue a statement on her behalf.
“No words can explain how much this means, not just to us, but to every family out there that has been affected by Spinal Muscular Atrophy.
“Introduction to early newborn screening will give these future babies a better chance at life.
“Early detection is crucial as SMA is a degenerative disease and if this had been in place when our daughter Mia was born we would still have our baby girl with us today.
“We miss our Mia every day but we are so thankful that we are able to raise awareness so other families won’t have to go through what we went through.”
No other Queensland family should ever have to go through this.