MELINDA Jones knows with almost complete certainty the last words she will ever hear will be from her doctor telling her to relax and to start counting back from 10.
Mrs Jones lives with severe vertigo, tinnitus, migraines, numbness in her arms and legs and vision impairments, a result of neurofibromatosis type two.
NF2 is one of three genetic conditions, including NF1 and schwannomatosis, which causes tumours to grow on nerves throughout the body, affecting hearing, vision and balance.
“I’m clinging on to furniture and walls to walk,” Mrs Jones said.
“My bed at the moment is my best friend.”
Mrs Jones currently has six tumours on her brain and one on her spine.
A recent MRI scan revealed a cyst growing in the middle of the brain and the Atwell mother of three knows surgery in July is a must if she wants to recover and see her children grow up.
While an operation is likely to improve her quality of life long-term, doctors will have to cut nerves inside the brain and connected to the ear to get to the tumours, meaning she is unlikely to ever hear again.
She is already deaf in her right ear from previous surgeries.
“If it wasn’t for my children I would not hesitate with surgery,” she said.
“But to know I will never hear their voices again or my future grandchildren’s voices, it has been hard.”
Mrs Jones said the family had been learning sign language and were making their home wheelchair accessible to help with her balance issues post-surgery.
She said she had found support after joining a Perth-based group and a worldwide one, where she could talk to others with NF.
Most support services for the condition are located over east, something NF Australia (trading as the Children’s Tumour
Foundation of Australia) chief executive Lisa ChengOK hoped would change in the future.
“We are currently facing a significant gap in knowledge when it comes to NF and with that comes a lack of much-needed support services,” she said.
“It is classified as a rare disease, but with it affecting one in 3000 births, NF remains underrecognised.
“It is a very complex, progressive, life-long condition.”
A fundraising page was set up by family friend Tracey RichardsonOK to help cover out of pocket expenses for tests, scans
and appointments and to help with house modifications and equipment Ms Jones she will need after following surgery.
It is one of many different ways the community, particularly those from Harmony Primary School, have banded together to help the family.
Ms Jones said she could not be more thankful, using the support as she progressed towards surgery.
“In the end you can’t let things get you down and let them beat you,” she said.
“I know I have a long road ahead of me and I always will; this genetic condition is not going to disappear and I may get worse.
“But I’m going to give it my all in believing in myself.
“Having a disability does not make you any less of a person.
It makes you appreciate life that little bit more and not take things for granted.”