Lovely Banks mum tells of daughter’s resilience as she battles a chronic genetic condition

A six-year-old girl will not let a lifelong genetic condition stop her from doing what she loves, as people come together for Neurofibromatosis Awareness Day.

Maria Luburic and her daughter Alex, 6, were both born with neurofibromatosis type 1 but they have never let it slow them down. Picture: Brad Fleet

A six-year-old from Lovely Banks has battled a chronic genetic condition since birth that causes tumours to grow along her nerves.

Maria Luburic knew there was a chance she could pass neurofibromatosis 1 (NF-1) onto her children and as soon as her youngest, Alex, was born she could see she had the gene.

She said a large birthmark on Alex’s stomach was the first sign she had NF-1.

Alex is also in the 15 per cent of people with the condition who has developed an irregular, painless, slow-growing tumour called a plexiform neurofibroma (PN).

Ms Luburic said Alex was 18 months old when the PN developed on her jaw.

“From 2021 to 2023 she did a clinical trial and it reduced the tumour by nearly 50 per cent,” she said.

“Because of the way it is on a blood vessel, they can’t operate.

“We have monthly visits to the Royal Children’s Hospital, bimonthly MRIs under general anaesthetic and bimonthly eye tests.

“She has a few learning delays associated with NF so she does speech therapy, occupational therapy and physiotherapy.”

Alex Luburic, 6, was born with neurofibromatosis type 1, but it doesn’t stop her dancing, swimming or playing soccer. Picture: Brad Fleet

NF-1 also impacts Alex’s fine and gross motor skills.

While tumours caused by NF are usually non-cancerous, Ms Luburic said she still kept a very close eye on any in case they became malignant.

She said now the clinical trial was finished Alex would see her doctors this month to discuss a new treatment and monitoring plan going forward.

Ms Luburic said Alex was a strong, resilient girl who had gone through a lot in her life so far.

“She loves to dance, play soccer and swim in the pool,” she said.

“She loves Barbies and she’s a big Taylor Swift fan.”

This Friday is World Neurofibromatosis Awareness Day, which aims to improve understanding of NF signs and symptoms, share the stories of people affected by the condition, and educate people about diagnosis and treatment.

The Children’s Tumour Foundation released an assessment this month into the health and social impact of NF in Australia.

Maria Luburic says her daughter Alex, 6, who was born with NF-1 is a strong and resilient child. Picture: Brad Fleet

It showed 28 per cent of patients choose to forgo treatments or care due to the expense.

Three-in-five caregivers took at least two months off from work, much as unpaid leave, and more than half permanently reduce their working hours.

Children’s Tumour Foundation chief executive Leanne Dib said with growing cost-of-living pressures families would increasingly be forced to make difficult financial decisions regarding care for their children and themselves.

“The benefit of this assessment is that it moves us from anecdotal feedback to data-driven recommendations that will provide a road map for improving health outcomes that impact NF patients and their families,” she said.

Originally published as Lovely Banks mum tells of daughter’s resilience as she battles a chronic genetic condition