A young Parkes man and his family are continuing to raise awareness around the rare condition he has been living with since he was born, one which for him has produced thousands of benign tumors throughout his body, resulting in constant pain.
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Hamish Neville, now 15, was diagnosed with Neurofibromatosis (NF) Type 1 when he was six months old.
The disorder affects an estimated one in 3000 people in Australia.
Neurofibromas (the tumors) are now growing around and in Hamish's spinal cord, causing constant worry and it is extremely risky to operate on the area.
Hamish's mother Libby said he is currently on a drug called a MEK Inhibitor to hold the growth of these tumors.
"We've had very little growth for four years now," Libby said.
"Except for one on his sciatic nerve because it's an ATypical tumor, which means the MEK inhibitor doesn't attack it.
"That one they are keeping a close eye on and it is to be removed, hopefully in the near future. It has grown quite quickly in the last three years."
The surgery to remove the tumour from Hamish's sciatica is an extremely delicate and high risk surgery.
Hamish's parents Libby and Duncan take their son to Westmead Children's Hospital every three months for scans and doctors appointments.
"We are very lucky with the medical fraternity at Westmead, we have an amazing group of doctors who have Hamish's best interests at heart," Libby said.
Hamish, being a complex case, has a fairly sizey team of specialists taking care of him including a neurologist, an oncologist, orthopedic surgeon, neurosurgeon, heart specialist, and endocrinologist just to list a few.
Due to NF he has muscle weakness and his bones are extremely weak which can create deformities, due to this Hamish has had a full foot reconstruction which saw him spend six months in a wheelchair.
Libby said despite being in pain all the time, Hamish's pain threshold is extremely high.
"He rolls with it, every day is a new day and we just take it as it comes," she said.
With no cure, Hamish and his family are passionate about raising awareness around the importance of research to help him and others with the condition.
"We also raise money for the Children's Tumor Foundation," Libby said.
"Again in July we will ride 50km cross country in Broken Hill at my sister and brother-in-law's property.
"They do an amazing job and the community out there get behind the cause. We raised close to $10,000 last year and hope to do the same again this year.
"The Parkes community have always been so supportive of us and our fundraising."
Hamish is in Year 9 at Red Bend Catholic College where his favourite subjects are wood and metal work.
"I enjoy playing hockey and cricket when I can and I like lots of fishing and camping," Hamish said.
"I like hanging outside with dad and push bike riding and driving around in the paddock basher."
Hamish has three sisters Maille (17), Bella (12), Eilish (10).
Libby said Hamish is a superstar to many people.
"He is very inspirational," she said.
"I've probably learnt more about life through him than I have through anything else we are truly blessed."
