Maeve's Law: Senators should grasp this chance to end mitochondrial disease

Importantly, they can offer hope to thousands of Australians who currently risk passing on the devastation of mitochondrial disease, instead giving them the prospect of having a healthy biological child.

Mitochondrial disease (mito) is cruel and heartless.

It's a disease that affects the mitochondria in our cells, which are vital to create energy that fuels the function of our body.

Mito can cause seizures, fatigue, heart problems, blindness, deafness, dementia (including childhood dementia), multiple organ failure and premature death.

Mito is passed on maternally from mother to child, and in Australia, around one young child each week will develop a severe form of the disease.

That's more than 50 babies a year.

There is no known cure for mito. But, Maeve's Law presents the opportunity to change this cycle of distress and suffering.

The Mitochondrial Donation Law Reform Bill 2021 is named after a young girl named Maeve Hood that lives with the disease.

Maeve is six years old this year. That's the same amount of time the law has been consulted on, debated and reviewed by experts (concluding in favour of the bill).

Mitochondrial donation is an IVF technique that can prevent the transmission of mito from an affected mother to her baby.

Australia's history of medical science, particularly in IVF and reproductive medicine, means we are well-placed to offer mitochondrial donation as an option to affected families in a well-regulated, safe and supportive environment.

Indeed, more than 60 eminent scientists, researchers, ethicists and clinicians have signed an open letter urging the passage of the law.

Passing Maeve's Law will allow those planning for a family the opportunity to become parents without their children suffering from mito.

But if Maeve's Law isn't passed, there is a significant risk this cycle will continue in my family and the thousands of Australian families affected by mito for generations to come.

My mother Lorraine died from mito.

My brother Peter died from mito at 45 years young. My eldest sister Linda died from what was presumably mito at just three days old. Not that we knew it at the time, but my grandmother also died from mito.

I don't say this to elicit sympathy, but merely to demonstrate how my sisters and I all carry the change in our mitochondrial DNA - one tiny little protein in the wrong place that wreaks havoc on my family's health.

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I have been privileged to meet so many everyday Australians affected by mito.

Parents who so bravely share their stories and precious memories of children they have lost.

Couples who are agonising with the decision over whether to have a child, knowing the risk they might pass on mito and a lifetime of struggle to their child.

But, as with IVF more broadly, we do need to acknowledge there are a diverse set of views relating to mitochondrial donation, just as there are ethical considerations with many modern medical procedures today.

It is true that children born as a result of mitochondrial donation will carry three people's DNA - as do people who receive an organ donation or a bone marrow transplant.

However, Maeve's Law is clear that the technique of mitochondrial donation exists explicitly and only for the purpose of preventing this debilitating disease.

Maeve's Law also reflects the incredible expertise of our medical and scientific community in this field, and the decades of research already undertaken in both Australia and overseas.

We must not miss the opportunity to end the passing of this genetic disease to our most vulnerable - our children.

Our elected representatives must not.

Because every parent deserves the right to ensure they can give their child the healthiest and happiest life possible.