It is a condition that affects more people than Cystic Fibrosis, Tay Sachs Disease, Duchenne Muscular Dystrophy, and Huntington’s Disease combined.

Yet it remains under-recognised and under-diagnosed, with only a limited number of support services available to assist those affected.

Hamish is the son of Libby and Duncan Neville and the brother of  Maille (12), Bella (7) and five-year-old Eilish – none of whom suffer NF.

He was only six-months old when diagnosed with the genetic condition after his parents initially sought an explanation for spots on Hamish’s skin – later explained to them as café-latte spots and synonymous with NF.

“I will never forget that day,” Libby said.

“Taking Hamish to see local GP Dr Gale and then being immediately referred to visiting specialist Dr Kerrigan who informed us of his suspicions before the diagnosis was later confirmed,” Libby said.

So commenced regular visits to the Outreach Clinic at Orange for monitoring of Hamish’s condition through the Children’s Hospital at Westmead (CHW) until 2010.

Hamish was two and a half when Lisch Nodules were discovered behind his eyes and only six years-old when MRI scans revealed dozens of benign tumours growing throughout his spine, spinal chord and pelvic area.

There is no cure.

“The main concerns are the tumours in Hamish’s neck which pose huge risks,” Libby said.

“Patients have had limbs amputated because of the tumours, but being in the spine and neck is a different scenario altogether.

“Any procedure to remove them would be 

extremely risky. 

“Hamish takes it all in his stride though, never complains and always has a smile on his face.

“We as parents can only hope that trials currently taking place in the USA will come up with a drug to shrink these tumours or at least hold them steady before Hamish loses function of his arms or legs.

There is nothing we can do but hope for a cure,” Libby said. 

Duncan works underground at Northparkes Mines and Libby at Western Wool Marketing three days a week.

Every three months they take Hamish to Westmead where he undergoes scans and the monitoring process associated with the tumours.

“Hamish is receiving the best of care through the expertise of eight specialists,” Libby said.

“While he is administered medication every night to control the pain and contact sport is totally out of the question, Hamish is a very bright, happy boy who otherwise has a go at anything.

“And I must say he gets wonderful support from the staff and students at Holy Family Catholic School.” 

Learning difficulties are also a common factor of NF.

The family has never sought financial assistance in meeting costs associated with Hamish’s treatment.

However, increased financial support to the Children’s Tumour Foundation of Australia would provide services to help them and Hamish face the frighteningly uncertain future. 

This month communities around Australia are being urged to ‘Step Up’ for NF Awareness Month to raise funds for vital support services.

Fundraising events will take place across Australia throughout May, with communities hosting family-friendly NF Walks to raise funds and awareness. 

Duncan’s sister Mia Lawrence who resides in Broken Hill, is currently in the process of organising a special walk in that city to raise funds.

Residents throughout the Parkes Shire who would like to donate to the appeal can do so by going to https://nfwalk.everydayhero.com/au/broken-hill-step-up-and-step-out-for-nf or by contacting Libby or Duncan on 0417478079 of via email libduncneville@bigpond.com 

Funds raised will help establish state-based Support Workers as part of the Children’s Tumour Foundation of Australia’s plan to roll out a National Support Network.

Increasing national availability of and access to NF support services will form part of the Foundation’s mission to improve the lives and outlook of adults and families coping with the life-changing effects of NF, including Hamish and his parents.

According to Lisa Cheng, CEO of the Children’s Tumour Foundation of Australia (CTF) NF is a lifelong condition with a wide range of severity.

“So while some may suffer from quite visible manifestations, others may go through life not even knowing they have it,” Mrs Cheng said.

“We are currently facing a significant gap in knowledge when it comes to NF, and with that comes a lack in much-needed support services. 

“While there are some great support and care services for children with NF, there are some limitations.

“Access to specialists with experience in NF and location of services are just two. 

“The same level of care and support does not currently extend to adults and young adults in transition from paediatric to adult treatment.”

Mrs Cheng is urging all Australians to Step Up and Step Out for NF all this month. 

“NF Walks are fun events the whole family can get involved with, and they allow communities to raise funds and awareness while meeting other families and building community support.”