How Harvey got to taste food for the first time thanks to new Wollongong therapy

He picks through his lunch box to find crackers, makes his mum and dad open up his yoghurt and cheese stick before casting them aside, and takes bites of a honey sandwich and slices of apple before running back to play.

While this hallmark behaviour of many toddlers might seem unremarkable, his parents Stacey and Shane are still blown away, because four months ago Harvey had never eaten food.

"My most exciting moment has been that for his third birthday last month, he got to eat his own birthday cake for the first time," Ms Lowcock said.

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"I remember crying about that when he turned two, because we didn't know what life would look like or if he would ever be able to do that."

Harvey has a rare neurodevelopmental disorder called CTCF syndrome, and - along with his dad and older brother Luca - is among only about 100 people in the world diagnosed with it.

The presentation and severity of symptoms can vary: Mr Lowcock only found out he had CTCF syndrome when both on his sons were born with similar developmental delays and got tested for genetic disorders.

Born during the height of COVID, it was first thought Harvey - whose symptoms were more pronounced than his brother's - had cerebral palsy, and he started receiving treatment with the Cerebral Palsy Alliance (CPA) in Wollongong.

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In particular he was treated for dysphagia, a condition common in children with cerebral palsy that makes safely swallowing and chewing difficult.

"As a baby, he was losing weight and he wasn't keeping anything down orally and was aspirating, so everything would end up in his lungs," Ms Lowcock said.

"He was tube fed and then they moved on to putting a PEG tube in his tummy. He was spending four hours a day in a high chair being fed formula."

Ms Lowcock said her son's speech pathologist, Jo Grayson, was determined to find a way for Harvey to be able to eat, and earlier this year received training in a US therapy called VitalStim - a non-invasive device that uses neuromuscular electrical stimulation to improve swallowing.

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Often used on older people who experience dysphagia following a stroke, Ms Grayson learned how to use the device on children and tailored the equipment to fit Harvey's tiny body.

CPA Wollongong is now one of the few places in Australia with the equipment and trained speech pathologists to deliver the treatment, therapy manager Kieran O'Brien said.

Ms Lowcock said Harvey received an intensive three-week treatment course in July, and was quickly able to try his first foods.

"He went from nil by mouth, to eating custard and yoghurt, to being able to eat sandwiches to now being able to eat crunchy things and chips and a happy meal with his brother," she said.

"He can eat with the other kids at daycare now too, where he used to have to spend half the day in his high chair."

Harvey will receive another round of treatment in November, as he still requires thickened water so he doesn't aspirate liquid.

Ms Lowcock said the effect on their family had been life-changing.

"Up until now, it's been like our life was on a schedule, almost like we had a tiny baby - so if we ever wanted to go places we would have to going make sure we had all the formula and medical equipment we needed," she said.

"It we were going away, we'd have to stop on the highway and hook him up to a pump every three hours, so we'd be stuck at home quite a lot.

"It's also taken the stress out of everything, because before anything that was in his mouth, was at risk of ending up in his lungs - so we had chest infections and hospital trips and all that kind of stuff."

"Now when we leave the house, all we have to take is his lunchbox - I know it's just a normal lunchbox but to us it seems unbelievable."