"He will bite himself, he will try to rip his central line out and he attacks his stoma. He doesn't know [how to cope with the pain]," his mum Whitney said.

It's so utterly heartbreaking because when he is well, the little boy from Googong is delightful, loving life with mum Whitney, dad David and big sister Lola, 5.

"When he has his good days, he is the most affectionate, beautiful, smiling, happy, adventurous little boy you'll ever meet," Whitney said.

Connor was born at 33 weeks with a non-functional bowel and in severe pain. He cannot open his bowel unassisted and it's not known if he ever will. He has already endured 18 surgeries in his young life and now uses a colostomy bag.

Connor and his family were featured in a McHappy Day campaign last year because they have spent so much time in Ronald McDonald House in Sydney.

Meeting Hollywood actress and McHappy Day ambassador Eva Mendes via Zoom was exciting but the family soon returned to their reality - that their little boy is in pain and cannot yet be properly diagnosed and treated, despite the very best efforts of specialists at The Children's Hospital at Westmead.

One of the sticking points is not being able to exactly pinpoint the problem in the bowel and treat it.

The family - aided by Whitney's colleagues at the Australian War Memorial where she works in retail - are fundraising to purchase a manometry machine for The Children's Hospital Westmead which will go a long way to helping Connor and children like him.

The machine maps out the bowel and measures the activity in different sections over a six-hour study and enables targeted treatment. The machine will greatly improve the quality of life for many children in NSW and the ACT who suffer from severe bowel conditions, like Connor's.

A fundraising golf day - which is open to the public - will be held at Fairbairn Golf Club on Thursday, May 27. Tickets are available via eventbrite.com.au or here.

A fundraising page has also been opened at bandagedbear.com.au.

All money raised will go towards the manometry machine.

Whitney said with the help of the machine, the damaged part of the bowel could be identified so that it could be removed, the bowel reattached and, hopefully, give Connor a working bowel and a chance to live without care.

"It's literally a way forward for treatment, diagnosis, everything for these kids," Whitney said.

In the meantime, the Gregg family is in a holding pattern, ever vigilant of Connor who can get very sick very quickly - fine one moment and vomiting bile the next

"It could be either his bowel twisting, he could have an obstruction, it could be his bowel just not working, it could be a number of things. Again, it's such unknown territory," Whitney said.

The family has approached NSW Health Minister Brad Hazzard to highlight the need for the manometry machine which is not available anywhere in the state, or in the ACT.

They also want a light to shine on children with bowel conditions.

"These kids need a voice, they need to be heard. Because as soon as you start talking about bowel problems or poo, people are like,'Nup, I don't want to talk about it'. There needs to be more awareness raised," Whitney said.

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