Peta Murphy (Dunkley, Australian Labor Party) Share this | Hansard source

This speech is dedicated to Ruby from Frankston, her mother, Janine, her sister, Isabel, and her brother, Trent. This is Ruby's story in the words of her mother Janine:

Ruby was welcomed into the world on 31 July 2007. She seemed perfectly healthy, was settled and feeding well. On the last night of our hospital stay, I had dozed off and woke suddenly; I looked down, Ruby had gone limp in my arms and her skin had turned a grey yellow colour. Immediately I knew something was wrong. I rushed her to special care – she had stopped breathing and the nightmare had begun. I was interviewed by the medical staff as to what had happened. I felt like a criminal. It was awful and I felt sick in the stomach.

A few days followed, and my husband and I were approached by a doctor who specialised in mitochondrial diseases. He started talking to us about the possibility of Ruby having one. It was overwhelming as we knew nothing about them.

The doctors decided to operate on Ruby to take samples of her liver for testing. At first I didn't want them to put her through any more pain but I realised that she would have to go through it as we needed an answer.

She made it through the operation but it was so bittersweet. We had just been informed that it was inevitable she was going to die as she was not thriving or getting any better.

We prepared for her death. It was surreal – like getting your beautiful child ready for a party – dressing her in a nice outfit and brushing her hair but in this case we were taking her foot and handprints and a lock of hair.

We were given a pram so we could take her outside. It was winter but the sun had come out, and she opened her eyes and once again seemed like a healthy baby just for a moment. I wanted to take her and run away with her right there and then to escape her impending death. She died an hour later in my arms.

A few months later my husband and I were called back to the hospital and were told that Ruby had died from the mitochondrial disease, Complex IV.

I have two other children. They are only young, but when they become adults, they will need to be tested.

Janine told me that it is so important that this legislation goes through. It will always be in the back of her mind—and Isabel's and Trent's minds—as to whether her other children also have mitochondrial disease, and they will have to be tested before they have kids. Isabel and Trent know about their sister Ruby, they know about their mother now being a big supporter and working with the Mito Foundation, and they know about this legislation. Janine said to me that what she went through with Ruby, and what she has to face for the future of her other two children, is something that she doesn't want any other parent to have to go through. She said it was heart-wrenching and their whole lives were changed. It was scary that Janine didn't know that she had mitochondrial disease that she could pass on in her genes.

Janine told me that, if this legislation had been in place and she had known what she knows now, she would have had the donation and that she will do anything to help the Mito Foundation, which didn't exist when Ruby was born. She told me, when I spoke to her a few months ago, when we saw that this legislation was listed, that she was crossing her fingers on this one. I have no doubt that, knowing this legislation was coming up for debate today, Janine is crossing her fingers today and will be tomorrow when we vote.

There are other families in my electorate whose babies have died and whose adult daughters have died. I know of an amazing young woman who has mitochondrial disease and is doing all she can to lead a life of joy and fulfilment and service.

It's for Ruby and her family and for everyone else who has a story like Ruby's and Janine's that I am supporting this legislation. I'm also supporting it because it is good science and it's science that will give people the opportunity for a longer, healthier and happier life. In the end, that's what we all want. If this science, this technology, can give that to people who otherwise might not have children, if it can give that to people who might otherwise have been born with mitochondrial disease and had a short and difficult life, then I believe it is my ethical and moral duty to support this legislation, and I'm doing just that. I respect people who have faith that means they have difficulties with this legislation; that's their right and their position. But I urge all my colleagues to do as others have done—to engage with the legislation, to engage with the Mito Foundation and to see if you can get to the position of also supporting it.

I want to thank the Mito Foundation for all the work they've done—their briefings on this legislation, their advocacy and their support for people like Janine from my electorate. I want to add my congratulations to the congratulations that others in this chamber have given to the Minister for Health for bringing this legislation forward and stewarding it through. I congratulate the shadow minister for health on the way in which he has conducted himself, and the previous shadow minister for health, with this legislation through our caucus.

Janine, I hope your fingers are crossed, and I hope you, Isabel and Trent get to see this speech and know that you have done what you can to help others not to have to go through what you went through.

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