Fiona Martin (Reid, Liberal Party) Share this | Hansard source

I rise to support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I thank the members before me for their contributions, particularly the member for Mayo and the members for Higgins and Macarthur for their medical insights.

This bill is about hope. I don't want to detain the House, but I would like to tell the story of the Catton family, who are constituents of mine, and their daughter, Alana. Reid constituent Toni Catton, who is the General Manager of the Mito Foundation, gave birth to her second child, Alana, in 2013. Very quickly, Toni noticed that Alana was behind on her developmental milestones. She was failing to thrive. After 10 months, the term 'mitochondrial disease' was floated. It was the first time Toni had heard of the condition, and she didn't know anything about it.

Toni was invited to take part in a nine-month research project at the Children's Hospital at Westmead, led by genetics professor John Christodoulou. Eighteen months after her initial diagnosis, shortly after Alana's third birthday, the Catton family's worst nightmare was confirmed. Medical specialists confirmed that little Alana had mitochondrial disease. It was also around this time that the symptoms of the disease began to take hold, and Alana began to lose motor functions. In the meantime, like every other parent who has just been faced with a terrible diagnosis for their child, Toni was introduced to the Mito Foundation and quickly learnt more about the disease, receiving information and support from the foundation. Here she learnt Alana's dire fate—that mitochondrial disease is a life-limiting condition with absolutely no cure. The childhood onset robbed her daughter of her life.

I was fortunate to have met little Alana in late 2019. Her mother, Toni, brought Alana to meet me at a mobile office in Concord in my electorate. What I saw was a beautiful young child in a wheelchair, a child trapped in a cruel reality of this horrible disease. As a mother with children about the same age, it broke my heart. There were no words for the sheer unfairness of what I saw and what this child has gone through.

Last year, Alana passed away just shy of her eighth birthday. Alana never really talked. Her muscle development was affected. Alana couldn't stand or walk or crawl or hold her own weight. She displayed dystonia and spasticity. She was fed directly into her stomach. Alana required full care. This is the reality of this disease. Alana's death was brought on by deterioration in the brain, and it was eventually her breathing.

Toni discovered that there were few treatment options and that prevention was the only option for children with mitochondrial disease. Toni says that mito donation is about saving life. She says that it allows a parent to have a healthy child that is related to them. For Toni and the Catton family, the mito bill doesn't change Alana's life or her family's experience. But they know it will have a significant impact on other families and could save up to 60 babies a year.

Alana had an older sister, who was three years old when Alana was born, and Toni's other daughter was also impacted by the experience of mitochondrial disease. As Alana's symptoms became more obvious, her sister had to face the reality of what was to come. Toni says that Alana's big sister became a real advocate for her and that she would make people understand that there was a real person there behind the horrible symptoms. Toni also says that no 10- or 11-year-old should have to go through the final stages of their little sister's life, Alana's life. Watching her sibling dying over 2½ days was absolutely devastating. Toni says that she and her family live with that every day, and there is a huge shadow left that can't be changed. She says that she tries to take joy from Alana's life, and she draws from that. She says no family should have to live with losing a child like that. Toni told me that legislation doesn't change Alana's fate; it doesn't bring Alana back. But, by advocating, it is her way of honouring Alana's life and helping other families.

This bill, called Maeve's Law, could also be called Alana's Law. It could be named after all the children who have been taken by mitochondrial disease. This legislation cannot return the children who have passed away from this dreadful disease, but it does give hope that no child in the future lives the reality of this horrible disease. I commend this bill to the House.

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