Daughter of Tamworth couple Charlene Colvin and Alex Marengo, Lilliana died of Di George syndrome in Sydney

Charlene Colvin and her partner Alex Marengo had just four months with their daughter Lilliana.

Lilliana had seemed stable after an emergency airlift to Westmead Hospital in Sydney, when she suddenly took a turn for the worse.

"We watched on as the staff gave their all to bring our girl back, but she was gone," Ms Colvin said.

"Half an hour later we heard the words no parent wants to hear."

Lilliana was born with Di George syndrome, colloquially known as the broken heart syndrome.

According to her father Mr Marengo, this meant being constantly prepared for sudden downturns in her condition.

He said they seemed to spend most of their time in Sydney, with just five weeks to enjoy their real home in Tamworth with their baby girl.

"But even in those five weeks we had two check-ups where we had to go to Sydney and back," he said.

"We spent nine weeks straight down there.

"At first we were living in the hostel down there, so that was pretty rough."

According to Mr Marengo they did eventually manage to find their way into Ronald MacDonald House, which made their accommodation manageable.

However, they would continue to struggle to get Lilliana to a weight and health where she'd be ready for more operations.

"We sold things if we had to," he said.

"My partner's parents helped out where they could and we just made do.

"Probably not the best financially, but I don't regret it at all."

Despite being only four months, Mr Marengo said they did what they could to make the most of their time together, even if they had to be close to the hospital.

"There was this period of time where she was fine, but we just had to stay down there in case something happened," he said.

"We went to the drag races three times down in Sydney while we were there.

"We also got to go on a ghost tour of Paramatta Gaol, which might seem a bit odd ... we just tried to do whatever we could with her."

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Since Lilliana's passing, Mr Marengo said he's "kept it together" for the others.

"Which is quite hard especially with the kids because you just want them to meet their little sister," he said.

"It's hard... by far the hardest thing I've ever been through."

The couple's other children have had their own challenges coming to terms with the loss.

Lilliana's sister is only 7, and Mr Marengo said the situation is still a bit hard for her to grapple.

"They're really smart kids and we've been pretty much up-front with them the whole time," he said.

"But my daughter, she probably won't understand for another few years yet."

As for their 11 year old son, Mr Marengo said the loss is felt more keenly.

"It's hit home pretty hard with him," he said.

For Lilliana's funeral the family will be saying farewell at a friend's property in Moonbi.

Mr Marengo said it was one of the places they were able to visit with her in their brief time back in Tamworth.

"We didn't get home very much, but there was a few places that we got to in the five weeks that we did, and this property was one of them," he said.

"We love land and property, and water ... [the funeral will be] down by a little creek that they've prepared and cleaned-up.

"We just thought that out of the town was where she'd belong ... to relax for a little bit out of the city life."

The family has also set up a GoFundMe to help with the funeral and recover from the financial strain the loss has also caused.

In her GoFundMe post to help raise money for Lilliana's funeral, Ms Colvin shared some of her daughter's character with the community.

"Thank you for touching so many hearts even through yours was broken, you loved so hard. Your cheeky smile and attitude will live on with me forever."

When asked how losing his daughter at such a young age has changed him, Mr Marengo said people have to cherish every moment.

"Never miss an opportunity," he said.

As for any other parents who may have to deal with a similar experience, Mr Marengo urged them to ask what they need to.

"If you think there's a problem or anything like that, you just ask the questions ... you might not get the chance again," he said.

"Back your instincts a little bit. That'll help a lot."

Lilliana passed on October 8, 2022.

Her parents now hope to take her ashes to New Zealand, where Ms Colvin's family is from.

The couple are also now planning an event to help raise funds for families going through a similar experience.

"We're pretty into cars, so we thought we'd start a little burn-out event for her and we're going to call it Loops for Lilly," said Mr Marengo.

"If we end up going ahead with it, the proceeds from that will go to the Heart Kids Foundation."

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