Following his birth, he was diagnosed with Lissencephaly - a terminal brain condition that developed from contracting cytomegalovirus (CMV) in utero.

Mum of two Hannah Croker said Albie's "nutritional and medication requirements are like a 24 hour job", and basic tasks such as picking up her daughter Beatrix from preschool, and grocery shopping were "impossible".

She said it was difficult to put him in the car due to him experiencing muscle spasms which made him "stiff like a board", and it was hard to know what other challenges he would have in the future.

Albie is also deaf in one ear, which is a common problem for about one in 10 babies who develop long-lasting problems from CMV.

The condition will shorten his life, and a GoFundMe was set up on March 6 to provide the Belanglo family additional support.

"He's our perfect beautiful blue-eyed boy and he's got some significant challenges ahead of him, but these funds will just help us keep him as comfortable, and get as much quality of life as we can for him, for as long as we have him," she said.

More than $55,000 was raised in a day, and that has jumped to more than $101,000 at the time of publication.

"We're speechless," the mother of two, who has been a midwife at Bowral and Campbelltown Hospitals said.

It has been challenging to access NDIS funding due to Albie's age Mrs Croker said, and so far funds raised have been used to hire someone to help with nursing, medication and administration needs.

Members of her and husband Dave's family have "put their lives on hold" to help out, and this help would make a massive difference.

"It's incredible especially when you know times are so tough for everyone at the moment, to think that people would be so generous is amazing," she said.

She has also been blown away by the generosity she has experienced from people in the Highlands.

This has included The 4K charity offering to pay for nasogastric equipment and medication, Hannah's school Chevalier College and their regular pub the Surveyor General Inn offering to do fundraisers.

Beatrix's preschool has also offered their daughter guaranteed bookings and spots for Albie when he is older, and the family has been supported by their local GP and chiropractor, and staff at Bowral and District Hospital.

Others who have had children with brain conditions have reached out to offer a listening ear.

Along with receiving assistance, Ms Murray said it was important to know about CMV, which is a member of the herpes family.

About 50 per cent of young adults have been infected by CMV, which can cause nothing more than a flu-like illness, but can be more serious for pregnant women and transplant patients.

Pregnant women can reduce their risks of contracting it by by washing their hands or wearing gloves after things such as changing nappies and wiping babies and children's noses, not sharing food and toothbrushes, and cleaning surfaces that have come into contact with a child's body fluids.

Those who want to help the family can go to GoFundMe.