MAEVE'S LAW HAS PASSED

MITOCHONDRIAL DONATION OFFERS REAL HOPE FOR AUSTRALIAN FAMILIES

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What is mitochondrial donation?

Mitochondrial donation is an IVF-based technique that offers real hope for families with certain forms of mito to have healthy children of their own.

Eligible Australian women with a genetic diagnosis of mitochondrial DNA disease will soon have access to mitochondrial donation under clinical trial conditions. The technique involves removing the nuclear DNA from a patient’s egg containing faulty mitochondria and inserting it into a healthy donor egg, which has had its nuclear DNA removed.

As the nuclear DNA is retained, the unique genetic information (that makes us who we are and determines what we look like) is passed on from mother to child, but the mitochondrial defects are not.

What's happening now?

On 10 April 2022, the Federal government announced funding for the pilot stage (AU$15 million) and applications closed on 14 September for a grant that will be awarded to a single consortium. The National Health and Medical Research Council (NHMRC) Embryo Research Licensing Committee will manage the licensing framework.

Mito Foundation has been working with researchers to influence the design of the pilot stage in a way to ensure that meets the needs of the mito community. This includes when people from around Australia will be able to access mitochondrial donation and how the clinical trial will work with other health care services. We're also identifying ways the mito community can be directly involved in designing how the pilot will work.

Download our Q&A document for comprehensive information on the next steps. Download our report for our recommendations to key decision-makers to help them design the pilot stage for the mito community.

Background to legislation change

The Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 was passed in the Senate on Wednesday 30 March 2022 with 37 Senators voting in favour of the Bill and only 17 against.

This followed a convincing majority vote in the House of Representatives on 1 December 2021.

This marks a historic moment for the Australian parliament and an enormous milestone for the mito community. The passage of Maeve's Law offers real hope for families impacted by mitochondrial DNA disease to have healthy children of their own.

When introducing the Bill into Parliament in March 2021, Health Minister Greg Hunt made a heartfelt speech and acknowledged five-year-old Maeve Hood who lives with mito and after whom the Bill has been named. You can read more here.

We thank Prime Minister Scott Morrison for his impassioned public endorsements throughout the process. Read more here.

The Government will now move towards the implementation phase to enable eligible Australians to access mitochondrial donation under clinical trial conditions.

Mito Foundation continues to talk to engage our Parliamentarians, including new members of Parliament. This work will build on what they learned about mito from the Maeve's Law campaign, and help them understand what else needs to be done to improve the lives of the Australian mito community.

Media Coverage

The power of community-driven advocacy

The passage of Maeve’s Law is the culmination of many years of advocacy and an inspiring example of the mito community working together. We thank all families who bravely shared their personal stories, met with parliamentarians and made heartfelt submissions. Your courage and tenacity made this milestone possible.

mito_ICON.MAEVE_Letters

1,915+ advocacy emails and letters sent to parliamentarians

mito_ICON.MAEVE_FaceToFace

196+ face to face meetings held with parliamentarians

mito_ICON.MAEVE_PhoneCalls

485+ phone calls and text messages to parliamentarians

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37 votes in favour of Maeve’s Law in the Senate

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3,500+ hours of work by Mito Foundation staff

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92 votes in favour of Maeve’s Law in the Lower House

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60 medical, scientific and ethical expert signatures on an open letter of endorsement

mito_ICON.MAEVE_Media

1,100+ media articles reached over 28 million people in 2020 and 2021.

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35,562+ tears of joy on 30 March 2022

What impact will mitochondrial donation have?

Mitochondrial donation will allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which will drastically limit their life.

An estimated 56 babies born each year in Australia could potentially be saved from inheriting mitochondrial disease.

Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits, are unable to work and may need full-time care. By protecting the next generation from mitochondrial disease, mitochondrial donation will have positive economic impact by removing this reliance on community, healthcare and social services systems.

These stories highlight the impact on real Australians:

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Maeve

Maeve's Law is named after five-year-old Maeve who lives with Leigh syndrome. Her parents are proud that her life will have even more meaning by helping to prevent other Australian families from passing mito onto their children.

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Maeve's Story

At five months old, Maeve developed bronchiolitis and she ended up in ICU for a week. She was having trouble feeding and had to be fed via a feeding tube.

After that, her development seemed to flatline. She continued to have trouble feeding and wasn’t putting on weight. Being my third child, I could tell Maeve wasn’t developing at the same rate as her older sisters, Olive and Isla. It became obvious she was lagging developmentally.

After watching her decline before our eyes, we were desperate to find some answers and fought hard to get her an MRI scan. She was eventually diagnosed with Leigh syndrome, a severe mitochondrial disorder, at 18 months old.

We were told that her maximum life expectancy is about 10 years. But we try not to think about the numbers. Our focus is on being positive and creating as many memories with our family as possible.

Maeve is now five years old and every day with her is a blessing. She can’t walk unaided; she uses leg braces and specially made shoes that allow her to walk small distances without a walker. Maeve can’t really talk, but she’ll point to things, and she can say a handful of words. There is a gradual decline with Leigh's, and most likely it will be one of her major organs that will fail.

But Maeve is lively and so happy. She has a beautiful energy that draws people to her. She just wants to give people hugs all the time!

We are proud to lend her name to the Mitochondrial Donation Law Reform Bill. Maeve’s life will have even more meaning by helping to prevent other Australian families from passing mito onto their children.

Bethany Hodge - 3

Bethany

Bethany sees the impact of mito as her sister lives with a type of mitochondrial disease called MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibres). Bethany hopes that with mitochondrial donation, she can have a family free of this horrible genetic condition.

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Bethany's Story

Growing up, my sister displayed a number of symptoms of mitochondrial disease including ataxia (tremors) in her hands, balance issues, hearing loss, speech impairment and intellectual delay. We knew there was something wrong, however, doctors couldn’t determine what caused her symptoms or how we could help her.

After a number of years of being put through various testing, my sister was diagnosed with a type of mitochondrial disease called MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibres). Once we received this diagnosis the rest of the family was tested. As a result of this testing, we discovered that mum, my brother and I were carriers of mitochondrial disease.

On a daily basis, my sister struggles with tasks such as eating, doing up buttons and shoelaces, writing and reading. In order to feed herself she uses one hand to steady the other. She has difficulty with her limbs which can impact her balance, thereby making her clumsy. Given these issues made my sister “different” she is often quite isolated and struggles to make friends. As a family, this has caused a lot of stress as she requires support with essential basic day to day tasks.

Mitochondrial donation would allow my partner and I to start a family with the peace of mind that we will not pass this horrible genetic condition onto our children. It will stop this vicious cycle of it being passed on from generation to generation. Mitochondrial donation will also provide us with the ability to have a child that has my DNA rather than the DNA of a donor egg. After seeing how mitochondrial disease has affected my sister on a day to day basis, we want to do everything in our power to prevent it from happening to our children.

Shelley Beverley

Shelley

Shelley had never heard of mitochondrial disease until 3 years ago - when her mother experienced a rapid decline in health.

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Shelley's Story

Shelley had never heard of mitochondrial disease until 3 years ago, when her mother experienced a rapid decline in health and passed away within months. Her brother passed away less than 18 months later, just weeks before his 35th birthday. It was found that both had mitochondrial disorders.

After genetic testing, Shelley was diagnosed with MELAS (Mitochondrial enchephalomyopathy, lactic acidosis and stroke-like symptoms). Currently she experiences hearing loss, hypertension and a heart condition which puts her at high risk of heart failure due to the family history. She has mitochondrial diabetes, muscle weakness and exercise intolerance. With such varied symptoms, Shelley’s life is filled with appointments with eight different specialists.

Shelley says “Mitochondrial disease has taken away half of my family, and left me fearing for my own future and for my partner. I am devastated that this disease could take away the opportunity to have our own biological child. I truly appreciate and value the traits I inherited from my mum and often look in the mirror to reflect what part of me belongs with her. I want this for my own child.”

Shelley’s partner, James says “if anything were to happen to Shelley, I want her special qualities to live on in our children. Mitochondrial donation would enable us to have our own biological child, free from mitochondrial disease. The harsh reality is, we have been ready to start a family for some time and our time is running out fast.”

The Beard Family

The Beard Family

In May 1997 everything changed for the Beard family when their daughter, Pippa, woke up in severe pain, unable to move.

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The Beards' Story

At 19 years old, Pippa Beard awoke one day in severe pain and could not walk. She spent one month in hospital and was initially diagnosed with fibromyalgia (a form of chronic fatigue) and required intensive rehabilitation to learn to walk again.

Six months later, she woke screaming with temporary blindness followed by multiple seizures. On her twenty-first birthday, Pippa suffered a complete nervous breakdown with frightening hallucinations.

As no two episodes were the same, and the range of symptoms so unique (which is characteristic of mito), a long road to diagnosis followed. Eventually, Pippa and her mum Rely both had muscle biopsies and MELAS (mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes) a maternally inherited form of mito, was confirmed.

The family spent the next couple of years in and out of hospital, often staying for weeks or months at a time. Several times, Pippa was placed in an induced coma and on life support when the seizures became uncontrollable.

Pippa’s sister Toby was later tested and diagnosed with MELAS. Although she only experiences mild symptoms, Toby now faces her most difficult decision yet - whether or not to have her own biological children. As MELAS is maternally inherited, this could severely limit her child’s life.

After initially being given a maximum of 12 months to live, Pippa proved to be an inspiration and bravely fought MELAS for 22 years. The last 12 months of her life were incredibly tough and she endured several stroke-like episodes, gut and bowel issues and declining cognitive function. She defied the medical experts so many times. Pippa’s brave fight continued until she died at home on February 4th 2020 with a team of incredibly loving and dedicated family and friends around her.

Rhonda Murray with her two daughters

Rhonda

Rhonda was 32 years old when she learnt her family was living under the shadow of mito.

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Rhondas' Story

Rhonda Murray was 32 years old when she learnt her family was living under the shadow of mitochondrial disease (mito).

Rhonda’s brother Peter suffered a stroke-like episode when he was 34. This was the beginning of Peter's painful 11-year journey with mito, which effectively took over his body by denying it the energy it needed to function. It robbed him of his hearing, his balance, his coordination and his cognitive skills.

At just 45 years old, Pete lost his fight to mito, leaving behind two beautiful children; his 13-year-old son, and his 11-year-old daughter.

Rhonda’s mother then had her first stroke-like episode at 61 years old, followed by multiple hospital stays and several periods in a coma. Just two years after her brother died, Rhonda lost her mum to mito.

Rhonda has since been diagnosed with mito and suffers from hearing loss and fatigue. Her two daughters aged 18 and 20 also carry the genetic mutation that causes mito and whilst they are not currently symptomatic, they live every day not knowing what's around the corner. When her daughters are noticeably tired or sick, Rhonda fears the worst as she knows mito could strike at any time.

“I hear of so many sick babies with mitochondrial disease, with a very short life expectancy, and I just don’t want my daughters to go through that. With mitochondrial donation, there is a big chance my daughters will avoid that and we can eliminate this cruel defect from our family for good.” Rhonda said.

Pam Hausler

Pam

Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.

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Pam's Story

Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.

It has impacted her greatly throughout her life and today she struggles with balance issues, exercise intolerance. regulating body temperature and a constant lack of energy.

As an infant, Pam’s daughter Shayli was described as having a-typical cerebral palsy, a description often used before mitochondrial disease was recognised. She was never able to speak properly and relied on a wheelchair. At 14, Shayli had her first stroke-like episode and was in and out of the Adelaide Children’s Hospital over the following five years. She lost partial vision after one of the stroke-like episodes, had seizures for 12 days and went into a coma for a while.

Shayli eventually went blind and her hearing became so sensitive that she could not bear her favourite pop music or even her dog. She was tested for everything known at that time, but all tests came up blank. She was eventually diagnosed with MELAS at 19 and sadly died three weeks later.

Pam’s mother also died of mito, and her grandmother's sisters all died young as a result of the disease.

Mitochondrial disease has impacted many generations of Pam’s family and she sees mitochondrial donation as a necessary step to prevent other families enduring this devastating pain in future generations.

Pam said “if mitochondrial donation existed when I conceived my daughter then she would still be alive, and she would have had the opportunity to have disease-free children of her own.”

News and Updates

Links and Resources

Mitocohondrial Donation Resources

The Science Behind Mitochondrial Donation

The Health Economics of Mitochondrial Donation

The National Health and Medical Research Council (NHMRC)