The Kootingal Moonbi Rugby League Football Club has been known to raise about $10,000 at its events, and this year’s is for Cystic Fibrosis Community Care.

May is Cystic Fibrosis Awareness Month and among the club members are the Joneses, who received the news a few months ago their newborn had the disease.

Seven-month-old Jesse, Joanne and Lad Jones’ third child, was diagnosed at three weeks from the results of his routine heel-prick test.

Mrs Jones said Jesse had been “really healthy” so far, but there was a lot to do and take in.

After diagnosis, the family spent a week at John Hunter Hospital in an intensive education program.

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They learnt how to do his physiotherapy, which at this age is percussion: pounding with a cupped hand to loosen the thick, sticky mucus in the lungs that the illness causes.

Mucus can trap bacteria and result in infections, which cause irreversible lung damage; lung failure is the major cause of death for someone with the disease.

“We do that twice a day, on each side of his body … his chest, ribs, lower back and higher back – each section for three minutes,” Mrs Jones said.

“It’s hard when he’s starting to crawl and doesn’t want to stay still. Also, you really think, ‘I am hitting him quite hard here’, but he often falls asleep in it.”

Mrs Jones said the family were also told to be “very, very careful” not to expose Jesse to germs.

“It’s hard: people want to give babies a cuddle and touch them, grab their hands, but we have to keep him back and politely say, ‘Please don’t touch him’ and try to educate people.”

Jesse is another of the region’s children who could benefit from a breakthrough drug, Orkambi, which will be listed on the Pharmaceutical Benefits Scheme if negotiations succeed between the manufacturer and the government.

She said Jesse was an easygoing baby who was “so happy all the time”.

“I said to my husband, ‘It’s like he knows he’s got to make the most of whatever he’s got.’”

The fundraiser will have cake and merchandise stalls, and raffles with prizes including two nights’ stay at Heritage Guest House in South West Rocks.