Get all your news in one place.
100’s of premium titles.
One app.
Start reading
Newcastle Herald
Newcastle Herald
Lucinda Garbutt-Young

Tom Smith is no ordinary kid and he got covered in chalk to prove it

TOM Smith was born into a family who love him in a way they can't articulate.

You can see it as his mother, Lynda, observes her 10-year-old son playing with his pet dogs. His father, Adam, stands just behind her, smiling as his son runs across the grass of their Oakhampton Heights home.

But Tom can't always run around with his peers. In fact, Tom's life has been a little different from those he loves since he was six months old.

Tom Smith covered in green and blue chalk, the colours of the Children's Tumour Foundation. Picture by Marina Neil

"We noticed his right pupil was asymmetrical. It was not round like his other one. That was our first sign," Lynda said.

At two years old - after many tests and specialist appointments - Tom was diagnosed with neurofibromatosis (NF). It's a condition that causes tumours to form on nerves, under skin and deep in the body. NF can lead to blindness, deafness, bone abnormalities, chronic pain and learning difficulties.

Some NF is cancerous. Tom's is benign. He has a tumour in the right side of his facial bones, along with dysplasia. The layer of tissue around his brain is thicker than most people's.

In early 2020 when Tom was just six, he had emergency surgery to relieve pressure on his eye. He was rushed to hospital again later that year.

"Over the last four to five years, there has been an obvious asymmetry to the right side of his face," Lynda said in a recent post for the Children's Tumour Foundation Australia. "As the years go by, you can see other children taking note of Tom's facial features."

Tom has to be careful playing sport and sometimes he is misunderstood by his peers.

"We have to monitor the right side of his face," Lynda said. "Lots of check-ups. We're always going to different doctors."

Tom in the chalk. Picture by Marina Neil

But Tom is fiercely resilient. He is intelligent, curious, and supported in a small school where he is known.

"He has a vitality for life that is beyond anything that we as a family have experienced," Lynda said in the Facebook post.

The Smith family have a "wonderful" team who are helping find answers for Tom's NF and recently, they have been supported by the Children's Tumour Foundation. Tom has met other kids with NF through camps and social events.

"They're an incredible, incredible foundation," Lynda said. "They provide so much support for the families.

"Tom [has met] other children who have what he has has to make him feel not so alone."

Tom loves his dogs. He loves his two older siblings and learning about the world. He loves his trampoline.

Adam, Tom and Lynda at their family home. Picture by Marina Neil

Tom doesn't love getting covered in chalk, especially when it goes in his ears, but he'll do it to raise awareness about the Children's Tumour Foundation.

This weekend, the foundation is running Conquer NF In Colour. The Smiths will join with hundreds of others in Sydney's Wentworth Park on Sunday to raise money for NF research. Over $2000 has already been raised for Tom's team.

"It's raising awareness," Tom said. "It'll raise a lot of money and it might go on the news!"

And the community has been wildly generous. An anonymous family will match up to $30,000 in donations.

For kids like Tom, what the future holds is uncertain. But Lynda is confident the love of his family, the foundation and an exceptional specialist team will see him through just fine.

Sign up to read this article
Read news from 100’s of titles, curated specifically for you.
Already a member? Sign in here
Related Stories
Top stories on inkl right now
One subscription that gives you access to news from hundreds of sites
Already a member? Sign in here
Our Picks
Fourteen days free
Download the app
One app. One membership.
100+ trusted global sources.