In her short six years, Canberra girl Jessica Russell has undergone more hardships and complications than most, living with a complex genetic condition that is causing tumours to form throughout her body.
She was diagnosed with Neurofibromatosis type 1 (NF1) at only nine months old and is now on chemotherapy after doctors discovered an optical nerve glioma, a slow-growing tumour in her right eye from NF1 when she was four years old.
Her mother, Carey, was diagnosed with NF1 around the same time as giving birth to Jess.
"She's a trooper, she's so strong," Ms Russell said.
"Of course, she has times where she's had enough and she gets tired, but she's amazing.
"They put all these drugs into her system and she still wants to go to school the next day and see her friends even though she doesn't feel the best."
NF is the most common neurological genetic condition and yet awareness is still relatively low in Australia, according to the Children's Tumour Foundation, the peak national body supporting people living with the condition.
It causes tumours to form on nerves in the body, including the brain and spine.
Progressive and unpredictable, it can also cause cancer, blindness, deafness, physical differences, learning difficulties and chronic pain.
A child is born with NF every three days in Australia.
"The rollercoaster with the tumours started when doctors noticed her motor skills wasn't where it should be. She had low muscle tone as well," Ms Russell said.
"When she was in pre-school, her teacher noticed she was falling over a lot.
"So we went back to the paediatrician who conducted an MRI and discovered the optical glioma in her right eye."
Ms Russell said they have had scans every six months and results have shown that the tumour had doubled in size, as well as another one on Jessica's left side.
"It was then impacting her vision, so the decision was made to start chemotherapy and that was a year ago," she said.
"We just have to wait for another three months to see where her tumours are. If they're stable, the chemotherapy will end, which would be really great for us."
In her story for the Children Tumour's Foundation, Ms Russell said she was not prepared to be told that Jess's optic glioma had more than doubled in size in just 12 months.
"I felt the floor move beneath my feet and my brain began to scramble to take in all of the medical terminology from the specialist," she said.
They put all these drugs into her system and she still wants to go to school the next day and see her friends even though she doesn't feel the best.
Carey Russell
As for herself, she said she was lucky because of her obstetrician who "looked at me and said 'I've seen those (symptoms) before and I know what they are'" after other doctors dismissed her symptoms.
Ms Russell is now in a clinical trial for high-risk breast cancer group for women with the condition.
She is also coming up for her second biopsy for lumps that have been discovered.
"I was really lucky to be put on a special trial. Last year, they found these lumps that I couldn't feel ... a lot of the times we have lumps and we put them straight down to NF, but we don't think they could be anything else," she said.
The Russells are two of the roughly 10,000 Australians affected by NF1, according to the Children's Tumour Foundation.
The foundation recently welcomed more than $4.6m in funding - the most dedicated to the condition in Australian history - awarded to four research projects to better understand the condition to help improve the lives of people living with it.
The funding is shared across the University of Newcastle, the Murdoch Children's Research Institute and Monash University.
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The foundation's national support coordinator Natalie McCloughan said they were elated to see these research projects receive funding boosts.
"We support hundreds of people each year living with NF and we know they are keen for research to continue providing answers and one day find a cure," she said.
Dr Tracy Dudding at the Newcastle project said they hoped to uncover genetic information that can lead to better treatments for people living with these tumours.
"There's no way of predicting whether a person will have less than a hundred or thousands of neurofibromas," Dr Dudding said.
Previous fundraising efforts for the foundation included Cupid's Undie Run, which was impacted by Covid last year.
The funding was made through the Federal Government's Medical Research Fund.
- To donate to the Children's Tumour Foundation: ctf.org.au.
