Dubbo's Payne family raising awareness of neurofibromatosis for son Callum

SUPERHERO: Six-year-old Callum Payne, who has neurofibromatosis, is always well looked after by his protective older brothers Blake and Hunter. Photo: AMY McINTYRE
SUPERHERO: Six-year-old Callum Payne, who has neurofibromatosis, is always well looked after by his protective older brothers Blake and Hunter. Photo: AMY McINTYRE

It occurs in one in every 2500 people, but for most of the community neurofibromatosis is an unknown disease.

May is neurofibromatosis awareness month. It's a condition Jarrah and Aaron only heard about when their son Callum was diagnosed with NF1 at eight-weeks-old.

NF causes tumours, generally benign, to grow on the nerves and skin. It was detected in Callum because of his cafe au lait marks - renamed by his family as superhero marks.

"At first it was terrifying," Mr Payne said.

"It's different when it's one of your own kids. When they were first explaining it you hear that they grow tumours and you don't know what to do. I fell apart but at the same time I saw Jarz falling to bits and I had to stay strong. I was so scared for him.

"Even to this day, you're always worried for him. He's oblivious and living his best life but you're always worried for him."

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In addition to the growths, Callum, who is now six-years-old, also has behavioural and learning difficulties. He regularly visits a speech therapist, occupational therapist, physiotherapist and has check ups with an eye specialist in Orange because the optic nerve is a common location for the tumours to grow.

But every case of NF is different. Ms Payne said she knows another child who has the spots, migraines and nosebleeds. Someone else has barely any spots but learning difficulties.

AWARENESS: Hunter, Blake, Aaron, Callum, Summah and Jarrah Payne are spreading the word about neurofibromatosis. Photo: AMY McINTYRE

AWARENESS: Hunter, Blake, Aaron, Callum, Summah and Jarrah Payne are spreading the word about neurofibromatosis. Photo: AMY McINTYRE

"With most other diseases you get given a diagnosis and 'this is what will happen and is wrong with you'. But NF is so wide," she said.

"With every little thing he complains of you sort of panic and think 'is that anything to do with it?'."

Because he's so young, the extent of Callum's tumours is unknown because he's be unable to have an MRI.

"Even if they do find a tumour it's sort of just a waiting game to see if it causes any complications. Then they look at surgery to remove them or make them smaller," Ms Payne said.

"He's got tumours on his rib cage but we have no idea what's in his little body."

But superhero Callum has some great protectors: his big brothers.

Ms Payne said they worried a lot about their little brother, especially when it came to social interactions, and were always there to protect him.

Mr Payne said his eldest sons had been an incredible help.

"Blake and Hunter roughhouse Cal at home but if anyone else tries to they're on to them pretty quick," he said.

"They're really good, especially Blake, he helps out to no end. He helps his mum like you wouldn't believe, he's such a good kid."

Mr Payne describes Callum as a "champ".

"Cal's a pretty big ray of sunshine. He'll make you laugh. He's so innocent in what he does that it's hilarious," he said.

To help raise awareness of NF, the family has been sharing a video about Callum and NF on social media. They also handed out cookies to his kindergarten classmates with an explanation of his disease.

With that alone, Mr Payne said May had been an incredible month for awareness. He estimated 50 per cent more people in Dubbo now know about NF.

Mr Payne said it was also unknown within the medical community.

"You can walk into any hospital now, walk up to a doctor and say 'my son's got NF1' and they will not known what it is. The doctors themselves don't know what NF1 is. There's a very select few that have heard of it," he said.

"We were finding that at almost every turn."

Mr Payne said he hoped by learning about NF, people would have more understanding and patience with Callum.

Ms Payne hopes it will lead to more compassion.

"We'd like people to be aware that, for one, this disease does exist, because most people don't know. And be aware of all the things that could happen to all children, not just Callum, who do have it," she said.

"Just be patient and kind. You get so many looks from people because to look at him there's nothing wrong with him so people just think he's being naughty, but he's not. He's got some issues that take a lot of working through."

This story Why the Payne family wants you to know about neurofibromatosis first appeared on Daily Liberal.