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When Victorian couple Louise and Raymond Pryde first set eyes on their beautiful newborn twins, they believed they were lucky enough to have two healthy babies after a long battle with IVF.

But in May this year, their 19-month-old daughter Aria died of a rare genetic condition called Vanishing White Matter Disease, a form of Leukodystrophy.

Just months before her death, Aria's twin brother Axel was diagnosed with an even rarer genetic disease, IQSEC2, for which he requires 24-hour care.

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It's unlikely he'll ever walk, talk or feed himself – and he suffers between 15 to 20 seizures a day.

"It's just gut-wrenching," Mrs Pryde said.

"We keep on saying to this day, what did we do so wrong?

"What have we done wrong in a past life for this to have happened, having twins with two completely rare genetic diseases?"

The first signs of Aria's illness appeared at nine months old when she was suddenly unable to sit or hold her head up anymore.

Shortly after her first birthday, she was given just weeks to live and discharged from hospital.

She died seven months later.

Unlike Aria's condition, Axel's isn't terminal – but it is untreatable.

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His parents are trying to raise awareness for genetic diseases in the hope it will lead to research that may someday help their son live a better life.

On Friday, Axel will be an ambassador for Jeans for Genes Day, which supports the work of scientists at the Children's Medical Research Institute.

"I'm not going to expect that he is going to have a normal life, I know that's not on the cards," Mrs Pryde said.

"But something other than the uncertainty we've been faced with.

"We are trying to spread the word, to see if there's anything we can do to help him later on in life in dealing with his condition, whether or not we can get him to walk or communicate with us in certain ways."

While Aria's and Axel's conditions are extremely rare, around 1 in 20 children in Australia is affected by a genetic disease or birth defect.

There are around 6000 genetic diseases, which makes it extremely difficult to test for many.

But experts say once a treatment is found for one disease it can often be applied for many more.

Children's Medical Research Institute Director Roger Reddel said the pandemic has brought home for many Australians why research is so important.

"For many people, the experience of living through a pandemic during the last 18 months has really opened their eyes to the power of research to change the world," Professor Reddel said.

"Now we are asking Australians to see the potential of our research to change the world for children living with genetic diseases."

All donations made on Thursday August 5 and Friday August 6 will be doubled by a donor.

Visit JeansforGenes.org.au

An Adelaide Hills naturopath has been formally prohibited from providing health advice on COVID-19 after publishing an opinion piece in a local newspaper that argued against receiving vaccination.

Wayne Liebelt, a naturopath in the Mount Barker area, authored an article in the Adelaide Hills Herald on June 24 which labelled COVID-19 vaccines as "anti-science, anti-human and evil".

Five days later, the Health and Community Services Complaints Commissioner (HCSCC) received a complaint from a member of the public about the article.

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Following an investigation, Commissioner Grant Davies issued an interim prohibition order against Mr Liebelt.

Coming into effect on July 29, the order prohibits Mr Liebelt from providing health services "in respect of health education and/or the provision of information related to COVID vaccinations".

It also prohibits the naturopath from providing advice in relation to the provision of the specified health services of COVID-19 vaccination.

The order lasts for 12 weeks.

Associate Professor Davies said even unregistered health care workers are held to community expectations.

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https://twitter.com/katelambe_/status/1422039967333720068

"The Code of Conduct exists to ensure unregistered health care workers do not pose a risk to the health or safety of members of the South Australian public," Associate Professor Davies said.

"Therefore, I have decided to investigate this matter as I am concerned with what Mr Liebelt has expressed in this article."

Mr Liebelt has not been suspended from offering other naturopath services, only the specific terms surrounding COVID-19 vaccinations in the order.

9news.com.au has contacted Mr Liebelt for comment.

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ANZ is closing six more branches across Australia, a decision which has drawn anger from a banking union.

Since the beginning of last year, ANZ has closed 152 branches, according to the Finance Sector Union (FSU).

FSU National Secretary Julia Angrisano said the timing of the shutdowns was "heartless", and would affect frontline staff and customers.

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Branches facing the axe include Mareeba, Queensland; Loxton and North Adelaide in South Australia; Ballarat East in Victoria; Osborne Park in Western Australia; and Sydney Airport in New South Wales.

Thirty-three staff are affected.

In a statement to 9news.com.au, ANZ confirmed the closures and said the bank was seeking to retain as many of the employees as it could.

But the FSU said the workers now faced an "insecure future".

"This is a heartless decision by the ANZ to close branches and impact the lives of staff at a time when bank workers are on the front line … in the middle of a pandemic," Ms Angrisano said.

"These workers are predominantly women."

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An ANZ spokesperson said the decision to shut branches was being driven by customer habits which were now showing a strong preference for online banking, not in-branch business.

"Last year alone 70 per cent of our customers preferred digital banking options."

Since January, 48 branches have been notified of closure this calendar year.

ANZ has programs in place for employees who suffered financial hardship after job losses, the spokesperson said.

"Of our employees that were working in a branch that closed last year, we were able to find new roles or redeployment opportunities for nearly all of them that wanted to stay with ANZ, including at remote locations."

In May ANZ posted a cash profit of $2.98 billion for the six months ending March 31, up from $1.32 billion last year.

During the pandemic, the ANZ share price almost halved but has since climbed above pre-2020 levels.

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