Havana Frost remembered for bubbly personality, beautiful smile

The Tumbarumba community has rallied around the five-year-old's family after she tragically died on Christmas Day.

Her mother, Jellila Frost, said she was the happiest little girl and despite facing hurdles throughout her life, never failed to make those around her smile.

"She was her own little unique person," she said. "Havana would never let her disability get in her way.

"I am so grateful for the joy she brought to me."

Ms Frost is determined to keep her daughter's legacy alive by doing whatever she can to bring a smile to people's faces and shine a light on the struggles children with disabilities faced.

Havana's older sister died from complications due to pneumonia B just before her seventh birthday.

It was not the only challenge she faced in her life. Havana had been diagnosed with Prader-Willi syndrome.

"So it means that they can be preoccupied with food and they can feel hungry when they're not hungry," she said.

"The signal in her brain was switched off to tell her she was full."

Havana had to be fed via a nasal gastric tube for more than a year after birth.

The family also spent a lot of time at Saint George Hospital in Sydney due to different complications.

"She was in special care for three months when she was first born, and even then we came very close to losing her a couple of times," Ms Frost said.

"When we lost Havana's older sister, Marley, in 2017 she regressed then as well.

"They were the best of friends, so losing Marley was extremely hard on her."

While the care regime could be rigorous, Ms Frost said Havana was a little trooper.

"She's always been such a brave little girl though, and always just full of smiles and brushes things off so easily," she said.

"She had to receive an injection every day that I had to administer, similar to a person with diabetes.

"That was something we had to do six days a week since she was about six months old, and she would never complain."

After the loss of Marley, Ms Frost decided to move back to Tumbarumba with her daughter to be closer to her family.

Recently, Ms Frost had purchased a home, an accomplishment she was proud of as a single carer.

"It was something I had to do for her because I knew I needed to set the house up to be able to manage her needs," she said.

"One of the things was getting a pantry cupboard built around the fridge to stop her getting in there.

"I had a gate system across the kitchen, so that way it would stop her getting in because if that was unlocked and there was just food sitting up on the cupboard, she would come in and eat it."

But while Havana faced obstacles in her life, it was the little things that never failed to bring her joy.

If a song came on, it did not matter if it was at the supermarket or home, she would start dancing.

"She was such a happy little girl and just unique and responded to music in all ways, it was almost a way we could communicate," Ms Frost said.

"She used to do little bits of sign language as well because she was partially non-verbal.

"I can remember her running through the aisles with a sweet potato, charging at people and squealing, just is so happy and people would - they couldn't help it - smile at her."

Ms Frost said she was incredibly grateful to her friends, family and the Tumbarumba community for rallying around her.

"They are the most beautiful people in this town here," she said.

"I am so lucky to have them because sometimes when you can't get out of bed what you need is to have someone off some home-made cooking."

Lina Taupeaafe has known Ms Frost for 20 years after they met working at the same bank in Sydney.

Watching her friend lose both her children has been heartbreaking, but Ms Taupeaafe said she is in awe of Ms Frost's strength and determination in the face of adversity.

"Jellila always wanted to be a mum, and she was an amazing mother to both her children," she said.

"She dedicated her life to making both Marley and Havana happy.

"Even though Havana couldn't talk much, you would still know she was so happy."

To help ease the burden, Ms Taupeaafe has set up a GoFundMe to support her friend.

"I just want to be able to help her cover bills, especially for house repayments, so it's just one less thing for her to worry about," she said.

"Every dollar will help with the funeral costs and saving this house that will now be in memory of Havana and Marley."

For more information, go to www.gofundme.com/f/in-memory-of-tumbas-havana-banana/.