Six-year-old Amarli Broome has a disease which means she can't walk, speak or eat, and for the past six months she has relied on a machine to help her breathe.
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But, as she battles an untreatable, incurable genetic disease that has only three documented cases worldwide, the Dapto girl remains strong and resilient.
Her smile helps her mum and dad get through the worst days.
"Despite all her challenges and everything she's been through, I can honestly say she's just such a happy little girl," mum Jade Broome said.
"She loves being around people, loves music and enjoys most things that any little six-year-old would be enjoying.
"She loves her two brothers so much and just gives off special energy and seems to draw everybody in."
Amarli was diagnosed with a genetic disorder called GRIK 2 when she was eight months old, which means she is developmentally delayed, with affected fine and gross motor skills, and regularly experiences epilepsy.
Additionally, after repeated chest infections - including a bad case of parainfluenza contracted in 2022 - she has severe breathing difficulties, and since last year has required a ventilator to breathe.
I know I'm hoping for a miracle, I guess. But Amarli's writing her own story, that's for sure.
- Jade Broome
She recently spent six months in Sydney Children's Hospital, and is now finally home - with her bedroom converted into a mini-hospital ward.
"Life has changed quite significantly for our whole family unit," Ms Broome said.
"We've basically been told that she's got respiratory failure and there's irreversible damage now to her lungs that we're seeing."
With Amarli's health more precarious than ever and with no clear path forward because of her rare disease, her family is hoping to draw on the strength of others to try to beat their race against time.
'We can't do it alone anymore'
Describing themselves as private people, who have spent six years focused on caring for Amarli - and their two boys, Bodhi, 8 and Jordi, 1 - Jade and Lee decided to share her story.
"It's almost like a sense of relief," Ms Broome said.
"We've been hiding behind our walls, and just have just tried to cope and manage.
"But, this last six months has been so, so exhausting and challenging, and we can't do it alone anymore.
"We're really struggling to find support workers that are actually qualified to help us, so that is one of my biggest hopes that somebody might see this and be able to help."
Currently on unpaid leave from her job as a nurse at Wollongong Hospital, Ms Broome is hoping to find help and financial support, and promote better awareness of Amarli's condition.
"She's one of three cases in the world, so when we're going to hospital, the doctors and the nurses are asking myself or Lee or the carers our opinion of what to do - because there's no textbook," she said.
They remain hopeful in an impossible situation.
"We've had all the awful conversations with the doctors, but we've taken that in, and we're just sort of pushing that aside, and we live in today," Ms Broome said.
"We don't know what's going to happen tomorrow, because with Amarli things can change things in an instant, but we remain so positive and hopeful that we're working towards a cure or even just treatment that will help.
"I know I'm hoping for a miracle, I guess. But Amarli's writing her own story, that's for sure."
'Lucky to live in the Illawarra'
They have connected with a foundation called Cure GRIN, which focuses on research, education and support for similar genetic diseases to Amarli's around the world, and are also organising a charity event to celebrate the little girl's strength and fund research into GRIK 2.
Ms Broome said she had been buoyed by the response so far, and was inspired by past examples of the Illawarra community coming together for support - like the campaign to fund a cure for Vanishing White Matter Disease led by the family of late Woonona girl Chloe Saxby.
"Already, the support that we've had from people that we don't even know has been incredible and overwhelming," she said.
"I know that we live in a wonderful community. It makes me emotional when I talk about it - I just think we're lucky we live where we live."
A charity walk on a well-worn path - and one less travelled
To help raise money the Broome family and their supporters are organising a charity walk in August.
Set along their well-travelled path - between Sydney Children's Hospital and Wollongong Public Hospital - the Trek for Amarli will take place over the weekend of August 3-4.
This will coincide with a Trek for Amarli on the other side of the world, where Lee and older brother Bohdi are joining family from England to climb up and down the Snowdonia Mountain Range six times over 50 hours.
"Most of Lee's family are in England, and it was his cousin who originally decided he would climb up and down the mountain - one for each year of Amarli's life," Ms Broome said.
"He felt that it was quite fitting to climb up and down the mountain, because that's what she's done in her life,"
Illawarra residents are invited to meet Jade at Stanwell Park for Day 2 of the walk on Sunday August 4.
All money raised from the 35 kilometre community walk will to go towards paying for ongoing treatment, medical bills, 24/7 professional carers and research into finding a cure.
Those who can not walk can join in at the finish line at Wisemans Bowling Club to help raise money through a silent auction.
How else you can help
Any one who can sponsor the event is being urged to email amarlisarmy@gmail.com
Kate McIlwain
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
