Born on November 26 last year, the baby girl has spent most of her life battling congenital heart disease.

Her Warrnambool-based parents Emma and Ben learned about the medical issue before Charlotte was born.

But, they said, regardless of this knowledge the experience has still been surreal.

Both being teachers, they said their main focus – aside from seeing Charlotte recover – was to increase understanding of congenital heart disease in the wider community.

“With congenital heart disease, it’s not really a well-recognised condition,” Mrs Miller said.

“Cancer in kids is very well funded in terms of research but because of the nature of heart disease, it’s more a hidden disease.

“You can look at heart kids and think they look quite normal, quite healthy. Unless you’re staring at a zipper scar you’re not really as aware of it.”

Complications followed Charlotte’s open heart surgery at the Royal Children’s Hospital in Melbourne three days after Christmas, meaning she’s been in intensive care for weeks.

The couple and their son Logan, 4, have been in Melbourne through the ordeal, and they don’t know how long it will be until they’ll be able to bring Charlotte home.

“We did have a chance to mentally prepare for it and you do as best you can, but it’s still such a rollercoaster,” Mr Miller said.

For now, the young family is stuck in limbo, and they want to thank medical staff and people at home for the support that has blown them away. Their respective school communities have rallied around them, including helping raise money to assist with costs, which they described as “amazing”.

“There’s also that feeling that even though you’re having this horrible time, there’s always someone that’s worse off than you,” Mrs Miller said.

“It’s so humbling, and you’re just in awe.”

Visit gofundme.com/support-for-charlotte to access the crowdfunding page.