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Hamish is helping bring NF out of the shadows

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Nine-year-old Hamish has been fighting a battle since he was just three and, while he’s had his moments, he’s done it all with a smile on his face.

He has Neurofibromatosis (NF) – a lifelong genetic condition that causes tumours to form on nerves in the body, including the brain and spine. 

His mum, Melissa, said the diagnosis came as a real shock. 

Hamish was a happy and healthy baby who met all of his milestones but Melissa noticed he lacked energy, had new birth marks appearing and began choking occasionally on fluids. 

What followed was several doctors appointments, a trip to a specialist and some tests before being diagnosed with NF. 

“Hamish was three when we found out he had a tumour on his brain,” she said. 

“We were all shattered by the news.”

Melissa adds that Hamish is okay now but because the tumour is inoperable they have to be careful and monitor it.  

“When we found out he had NF the outcome of the brain tumour was not as scary, it’s a benign tumour that he has to have checked now with 12-monthly MRI scans,” she said. 

“Now we just take it day-by-day – we’ve been so lucky to have a pretty good outcome from a pretty bad situation. 

“He is as happy as anything, he goes with the flow and whatever he does, he does with a smile on his face.” 

For Hamish the diagnosis is a bit scary but Melissa and her husband Mark try to prevent him from worrying too much. 

“I think I have protected him from it, he doesn’t really know what it is, he just worries a little bit,” Melissa said.

“I don’t believe he needs to know too much about it, we just deal with what we get.

“It’s too scary to think about – what’s the point in worrying.

“He could continue as he is now but he could also take a turn, we just live in the now.” 

While they don’t know what the future looks like for Hamish, his family is hoping it is a long and happy one. 

Melissa says the worst part of the diagnosis is the fear of the unknown. 

As one of the faces of the Children’s Tumour Foundation, she is sharing his story during NF Awareness Month.

Since the beginning of May, the Cessnock locals, alongside the foundation, have been bringing NF “out of the shadows”. 

“The Children’s Tumour Foundation contacted me and I was happy to share our story,” Melissa said.

“What we’re dealing with is pretty tough but it is just this benign tumour we have to keep an eye on, some other kids are worse off – we’re happy to share our story to raise awareness.”

While it’s a condition not many of us know about, on average every three days a child is born with NF in Australia.

With limited treatment options and no cure, those diagnosed can spend much of their lives watching and waiting for further signs of progression.

The foundation hoped the campaign would start a national conversation about NF to increase awareness of the condition amongst the general population.

It also has extra meaning this year after it was announced that $8 million in federal funding was being delivered to research NF and support the Children’s Tumour Foundation. 

Go to the foundation’s website for more information.

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