Purple walls adorned with music posters and family photos, and a bed covered by her favourite My Little Pony blanket, are a colourful reminder of the impact Tori Punch made in her 24 years of life.

While the lights are off and the music no longer rings out from her bedroom, her mother Wendy Punch makes sure there is still music playing in the lounge room for her "happy, bubbly girl".

"Tori showed us how to be strong, [how] to get through it all," Wendy said.

Tori died earlier this month after a long battle with Proteus syndrome, an extremely rare genetic condition that caused overgrowth of her bones, skin and tissue.

She was diagnosed at just 14 months old and, despite being unable to walk, she never let it stop her from enjoying life and pursuing her passions of singing and dancing.

"She had her carers all the time in there, doing karaoke with her in the room, dancing," Wendy said.

Wendy said Tori was a big fan of celebrating birthdays and she remembered fondly one birthday during COVID, when more than 500 cars — including emergency services — showed their support.

Her last birthday — in May this year — was made special with a visit from her favourite local musician and a party that ended with a cake fight with her siblings.

"Tori was like my best friend," older sister Melinda Radburn said.

"I feel like Tori was the glue that kept us all together."

Rare condition

Proteus syndrome is an extremely rare, non-inherited mutation of the AKT1 gene, with fewer than a few hundred cases documented worldwide.

Babies are typically born without apparent deformities, but symptoms appear in the first two years of life.

"With everything that the syndrome brought to her, she never let it impact who she was," her sister said.

In 2018, the family fought to get access to a medical trial from the US, which they were eventually granted, and Wendy said it was the reason Tori defied the odds to reach the age of 24.

"When Tori first got diagnosed with Proteus, we'd never heard of it in our life," she said.

"We had to do a lot of research to work out everything regarding the syndrome.

"Tori had been fighting for 24 years … she was the boss of it."

An inspiring woman

A Facebook page moderated by her family has amassed more than 35,000 followers, many posting about how the young woman had inspired them.

"You touched my heart on how strong you were. I loved seeing yr [sic] video and photos of you smiling and singing," follower Tracy Horscroft said.

"I know I never met Tori but the updates on her page gave me smiles," Adele Pate said.

Her mother said the community response was overwhelming.

"A lot of feedback has come back, people telling us that, with Tori's page — that we've had going for around 15 years now — that it's given them inspiration to get up and do stuff," Wendy said.

"It's given me a lot of comfort, with a lot of the messages that have come through."

"It shows that Tori didn't just genuinely have an impact on us, that she had a wider reach to so many people," Melinda added.

Her family said plans were being made to hold an open funeral the wider community could attend in Bundaberg later this month.