Centre Alliance MP Rebekha Sharkie has always kept her family life private. Until now.
Her grandson Liam was born premature and struggling for life in February 2020.
"Liam was eight pounds. And yet the nursing director said to me, he's the sickest baby on the ward," Ms Sharkie told Parliament, her voice trembling and faltering as she recounted his start to life.
"[He was] hooked up to IV lines in every limb to stop him going into cardiac arrest. He was intubated and heavily sedated and we were told he was on a knife edge and things could go either way."
Supported in the House by fellow crossbench MPs Helen Haines and Zali Steggall, Ms Sharkie offered a very personal insight on Monday night as she debated a controversial mitochondrial donation bill called Maeve's Law.
The bill, which is set to go to a conscience vote in Federal Parliament - the first since same-sex marriage passed in 2017 - is understood to have majority support, but it is opposed by religious groups and MPs such as the retiring Labor MP Chris Hayes.
Mitochondrial disease can be fatal. There is no cure and there are no effective treatments. The bill before Parliament would facilitate mitochondrial donation through IVF procedures using donor eggs.
Opponents to the bill say they cannot support it on ethical grounds. They are concerned by the technology and by any possibility it could be a step towards the commercial supply of donor eggs.
The member for Mayo's grandson has a rare, life-altering mitochondrial disorder, known as phosphoglycerate kinase deficiency or PKD.
In his short little life, Liam has had countless hospital admissions, operations and procedures. He was on oxygen day and night for more than a year after his birth, and Ms Sharkie says he hasn't been able to reach usual baby milestones. Even eating is difficult.
"His little veins are so compromised ... getting a blood sample or tapping a vein to conduct an MRI is such an ordeal," she said.
"My grandson's muscles are wasting away, his organs are compromised. A tummy bug will send Liam to hospital for a week suffering renal failure.
"[The] MRI now shows a thickening of the skull, and his brain has signs of white matter next to grey matter. That's brain atrophy, like dementia for babies."
Ms Sharkie explained her daughter-in-law has been advised she should not have anymore children and she says she feels great pain over her family's experiences.
She said she was sharing her story as a grandma in pain in a bid to change the way mitochondrial diseases are treated in Australia. She said the bill on offer is about prevention.
"These are metabolic diseases that we can easily identify now with modern technology sitting on specific X chromosomes, and we have the medical technology to intervene to stop suffering," she said.
"I share with you my personal story in the hope that members in this place who were undecided on how to vote will vote on this bill. And I hope that I have given them a little more insight into the pain that it causes and hope that this one day will not be OK.
"We need your courage as members in this place to make that hope a reality."
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