Rebekha Sharkie (Mayo, Centre Alliance) Share this | Hansard source

The passage of this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, will determine whether Australian parents impacted by mitochondrial disease will have the ability to minimise the risk of their children inheriting this devastating and life-threatening disease. Firstly, I'd like to give a shout-out to all the volunteers involved in yesterday's mitochondrial disease fundraiser, the Bloody Long Walk. Over a thousand people participated in the 35-kilometre walk around Canberra yesterday, and I was pleased to join for the last leg and raise some funds for much-needed research and awareness. In total, the group raised $175,000, a huge achievement for one day.

What is mitochondrial disease? It refers to a group of disorders that sit in the metabolic diseases category. They are a group of X chromosome linked genetic conditions that affect the mitochondria, the powerhouses that are found in every one of our cells. The mitochondria's main function is to produce energy, which is greatly needed in high-energy-demand organs such as the heart, muscles, brain, liver and kidneys. In layman's terms, when your mitochondria doesn't work you cannot produce energy and you suffer organ dysfunction as a result. This can mean loss of eyesight, brain dysfunction, strokes, epilepsy, organ failure and developmental delays. One in 200 carries the mitochondrial disease gene. There are approximately 350 variants of mitochondrial disease, and more variants continue to be found. Symptoms can present at any age, from infancy until late adulthood. It is a ticking time bomb for those who carry the gene. Often, the younger the onset the more pronounced the disease. Currently, there is no highly effective treatment or cure. There is an Australian born every week who will develop severe mitochondrial disease.

This bill is an important step forward for families affected by mitochondrial disease and will reduce the burden of disease for future generations. The bill has had extensive consultation, including in the Senate Community Affairs Legislation Committee's inquiry into the Mitochondrial Donation Law Reform (Maeve's Law) Bill; the committee's 2018 inquiry into the science of mitochondrial donation and other matters; subsequent consultation and work led by the National Health and Medical Research Council; and Department of Health consultation on the bill earlier this year.

Mitochondrial donation is an IVF based technique with the potential to prevent mitochondrial disease in the next generation of Australian children. Mitochondrial disease is carried on the maternal line, and mitochondrial donation involves replacing the faulty mitochondria with healthy mitochondria within an egg. A fertilised egg is then transferred to the mother, as per current IVF practices. Mitochondrial donation law has been active in the United Kingdom since 2015. Unfortunately, there's been much spreading of disinformation and fearmongering about this bill. This is not about genetically engineering a child to have blue eyes or blond hair or brown eyes, and it's not playing God. This bill is simply about allowing medical technology trials to give hope to families that they can have children free of mitochondrial disease. Similar fearmongering happened decades ago when IVF technology was considered. Now IVF is commonplace and has given thousands of childless couples the ability to become families.

This bill is named after a little girl called Maeve who lives with mito. I would like to thank all of the families who have openly shared their personal stories to build awareness and support. Last week I spoke to Suzie from Lobethal in my electorate. Suzie and her husband lost their beautiful little baby girl, Dot, to mitochondrial disease in December 2019. At the time the Georgiou family lost their little girl, the Lobethal community, where they lived, were suffering terribly with the Black Summer bushfires. Suzie said she remembered praying at the time, saying to the universe, 'Take my home, but spare me my child.' But this didn't happen. This bill cannot change the diagnosis for those born, but it will give hope to families who currently have none.

I barely talk about my family in this place. I know some members do, and I respect that. Many of the cards and newsletters that are on our tables have lovely families in them, but I've always kept my family life quite private. However, for this important legislation, I will make an exception, and I've sought permission from my son and my grandson's mum to share our family story. Little Liam, my grandson, was born in February 2020 after a healthy full-term pregnancy. Liam was delivered by emergency C-section, not breathing. He was resuscitated and emergency transferred to the Women's and Children's Hospital. It was a traumatic birth for Liam, who then spent a long time in the neonatal ICU and then the special care unit. Most babies in the neonatal ICU are premature, some as big as your hand. Liam was eight pounds, yet the nursing director said to me, 'He's the sickest baby on the ward.' Hooked up to IV lines in every limb to stop him going into cardiac arrest, he was intubated and heavily sedated. We were told he was on a knife edge and things could go either way.

Life for Liam has been, from that day, a very difficult journey but one that has been filled with love. On oxygen day and night for more than a year after his birth, it was a big step forward when Liam was able to not have oxygen in the daytime but only at night. Liam, in his short little life, has had countless hospital admissions, operations and procedures. We knew something was wrong. His little veins are so compromised that getting a blood sample or tapping a vein to conduct an MRI is an ordeal. I would like to thank the numerous teams at the South Australian Women's and Children's Hospital that have helped keep my grandson alive. The feeding team, the neurological team, the renal team, the metabolic team—the list goes on. His file, when I last glanced at it, is about 15 centimetres thick. They do extraordinary work at the hospital.

Liam hasn't been able to reach the usual baby milestones—to roll, to roll over, to sit, to crawl, to talk, to walk—and this makes him so frustrated. He loves to play peekaboo and uses all his energy to slowly raise a hand over his eyes. Eating can be difficult. Every single action that your body makes uses a muscle, so every movement and function is a challenge. In the end, genetic testing revealed a diagnosis of phosphoglycerate kinase deficiency, or PKD. It's incredibly rare, and it sits within the mitochondrial disease area. My grandson's muscles are wasting away. His organs are compromised. A tummy bug will send him to hospital for a week, suffering renal failure. His CK levels reach 150,000 units per litre. A healthy adult has a CK range of between 26 and 200 units per litre. When this happens to Liam he experiences severe muscle damage and the damage to organs is immense. MRIs now show a thickening of the skull, and his brain has signs of white matter next to grey matter. That is brain atrophy. It's a bit like dementia for babies.

Because of this genetic condition, Liam's mum has been told she should not have any more children. How do you say that to a young woman? This means Liam will never know the joy of having a little brother or sister. My heart hurts for Maeve and for Liam and for all the other children suffering. And my heart hurts for their parents. As a grandma, I feel like my pain's doubled: the pain I carry for Liam, the pain I carry for his mum and dad and the pain I carry for my other children who dearly love their nephew. I feel such pain for Dot's family and all the families who have lost their child. No parent should have to bury a child.

As a grandparent, I just want hope; I want hope for all families who carry these genetic diseases. 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 the suffering. I share with you my personal story in the hope that members in this place who are undecided on how to vote will vote for this bill, and I hope that I have given them a little more insight to the pain it causes and hope that, one day, this will not occur. We need your courage as members in this place to make that hope a reality. Thank you.

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