But while COVID-19 grips the state, hospital restrictions have meant the whole family has been unable to be by her side.

And for parents Jodie and Raoul de Gille, it has been "torture" not having Mylah and her siblings Flynn and Addison all in one room.

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"When Mylah was born, it was uncertain how long she would live, so the children were able to get an exemption to meet their sister," Mrs de Gille said.

"But now that her condition is considered manageable, we aren't able to have the kids here with her now."

Mrs de Gille said 23 weeks into her pregnancy, doctors began giving bad news about Mylah's condition.

"They picked up some cardiac issues in a scan in Melbourne and at 26 weeks Bendigo decided each complicating element in my pregnancy wasn't just related to my diabetes, and transferred our care to the Royal Women's," she said.

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"From there, I came to Melbourne weekly, sometimes twice weekly, for scans and checks, and each time they found additional concerning factors.

"At 29 weeks we had an amniocentesis performed to test for genetic conditions. We had planned to drain fluid for me then too, but on the day it was too risky."

And then, four days before her birth, the couple received news that their unborn daughter had a severe form of a genetic condition, which would later cause a string of difficulties.

'"We were told her heart condition was the most pressing issue," Mrs de Gille said.

"Within this genetic condition, there are many different paths and outcomes that affect this lifespan.

"Sadly she seems to have a significant part of the chromosome missing, which means she has more and more issues and complications to deal with.

"These limit her life even further and while doctors are still unsure, they've told us she could live to the age of two, maybe four if possible."

The condition, which the family has asked not be named, is said to affect 1 in 100,000 babies born in Australia each year.

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She said while Mylah's conditions could be managed with medications for now, the emotional distress of the situation was still taking a toll on the family.

"While this medication buys us time, for now, this is time we haven't been able to spend as a family," Mrs de Gille said.

"The hospital and its staff have been so wonderful to us and my husband and I are able to stay in accommodation near the Royal Women's and able to visit Mylah at 24/7.

"But because her condition is managed at the moment and isn't considered terminal, we can't get an exemption to have our children come and visit her.

While Flynn and Addison live with family in Bendigo and are able to see their parents, this brings more stress to the couple.

"Our family is amazing and they're able to bring the children here at any hour," Mrs de Gille said.

"But there in, the children and our other family members are potentially putting themselves at risk of contracting COVID-19.

"It's an overall stressful situation."

Mrs de Gille said not having her children together was "heartbreaking"

"It's breaking me as a mother," she said.

"We want to make memories as a family that will last us a lifetime.

"To allow Flynn and Addison to touch her, read to her, sing together.

"Build blocks, play with lego, do dance concerts and sing 'Defying gravity' as loud as we can."

After posting a plea to Facebook, Mrs de Gille said she was "overwhelmed" by the support her family had recieved.

"We've received so many beautiful messages and it's amazing to have so many people there to support us," she said.

"I usually have things on Facebook very private and decided I needed to get the story out there somehow so made this post public.

"From people offering us support help to just say they're praying and thinking of us, it's just so amazing in what is such a tough time."

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She said while Mylah was as healthy as she could be right now, the children needed to be able to really meet their sister.

"For a child with a heart condition, this medication gets them to surgery," she said.

A risky, long, complicated procedure, but one where a child can then hopefully go on to lead a healthy, happy life.

"We know the surgery won't change any long term outlook for Mylah, so for now we want to be by her side and fight along with her."

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