Just four months after Jess and Alex Smith brought baby Maverick earth side, they knew something wasn't right.

A week later, Maverick was diagnosed with Langerhans Cell Histiocytosis (LCH) an extremely rare form of cancer which causes tissue damage and lesions in the body.

Mr Smith said the diagnosis was every parent's worst nightmare.

"We were shocked," he said

"You don't wish it upon anyone for your kid to be sick."

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Due to the rarity of the disease, Maverick was transferred to the John Hunter Children's Hospital in Newcastle where it was discovered the cancer had spread to his lungs.

While things were looking up for Maverick and the Smith family, he unfortunately relapsed in August.

"We were told that the relapse was worse than they thought, with a tumour or lesion on nearly every major bone in his tiny body, including his spine."

Maverick is currently participating in a clinical trial where an average day consists of two hours of chemotherapy every 12 hours, but despite this Mr Smith said he hadn't lost his fighting spirit.

"He's always laughing and trying to play," he said.

"He'll be a tough little bugger when he's done."

With Jess unable to work due to staying with Maverick in Newcastle, and Alex holding down the fort with their daughter Matilda here in Tamworth, the couple have started a Go Fund Me page to help with medical expenses, bills, groceries and maintaining a sense of normality for the family.

"We're just trying to keep afloat," Mr Smith said.

"We will be living in two different cities for a minimum of seven weeks."

Although the page had been set up to offset the family's money worries, Mr Smith said raising awareness was just as important, especially given how rare the form of cancer is.

"We don't want any other family to go through what we've gone through," he said.

"Any money left over at the end we will give straight to research and the Ronald McDonald House," which Mr Smith said was a place very close to the family's heart after spending 120 days there.

Mr Smith hoped sharing Maverick's journey would help the family reach their fundraising goal of $30,000 and improve research for childhood cancer.

"The more support we get, the more help we get, the more grateful we are," he said.

To donate, or find out more about Maverick's story, visit https://www.gofundme.com/f/mavericks-lch-childhood-cancer-journey

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