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

I rise today to bring awareness to an issue that is close to my heart and which affects approximately one child born in Australia each week: mitochondrial disease. This genetic disorder passed directly from a mother to her child is caused by mutations in an individual's nuclear, or mitochondrial, DNA. It is a devastating condition. Common symptoms include developmental delays; seizures; weakness and fatigue; muscle pain; vision and hearing loss; and multiple organ failure and heart problems, leading to mobility problems. Severe cases cause premature death.

With no known cure, and very few treatment options available, parents are often told by doctors that there is nothing that can be done. They must watch their child suffer a cruel and slow death. It is every parent's worst nightmare and the grief must be unimaginable.

One local constituent in Concord, Ms Toni Catton, has given me personal insight into the mito community. Toni is the general manager of the Mito Foundation, and she has played a vital role in advocating for greater awareness, research and treatment for mitochondrial disease. Like many people working for the organisation, Toni's passion to find a cure comes from personal tragedy. Her beautiful daughter Alana was diagnosed with mitochondrial disease when she was only three years old. I met Alana shortly after I was elected as the member for Reid, and I will never forget the bright, bubbly young girl who approached me with her mum while I was at a mobile office. She tragically passed away from the disease last year, only three years after being diagnosed.

Toni has ensured that Alana's legacy will live on by continuing her daughter's fight against the disease that took her life too soon—and that fight has not been in vain. There is an opportunity now for us to legalise mitochondrial donation here in Australia. This assisted reproductive technology can help stop a mother from transmitting mitochondrial DNA to her child. In 2015 regulations were passed in the UK, approving mitochondrial donation to be used for human reproductive purposes to prevent mitochondrial disease. In the coming months, there will be a conscience vote when legislation to legalise the treatment is put to parliament. For those who have seen the suffering of this condition, mitochondrial donation is nothing short of a miracle. I want to assure Toni and other members of the mito community that I will be supporting the bill. It's the least I can do to support the fight against mito and honour the memory of beautiful little Alana.