"There was no end in sight, never getting easier, only getting harder, in fact," Jessica Nagle said.

"Victor was so unhappy, so frustrated in himself especially around communication.

"And I mean screaming, biting, kicking, himself and us as carers for probably a good two, three, sometimes four hours a day and that is very emotionally draining.

"He just never slept, just stopping him from eating hair was massive, we just ended up in hospital all the time because he'd get a bowel obstruction."

But getting the proper supports in place made all the difference for Victor, now 4, whose recent milestones have included enjoying birthday parties and getting a haircut.

Ms Nagle said Victor's health concerns, such as global development delay, autism, epilepsy and pica (a psychological disorder that caused a compulsive need to eat non-food items), arose from a chromosome mutation.

"All of his little quirks and challenges in life, all stem back from the same reason someone has Down syndrome, just luck of the draw," she said.

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The situation put immense stress on everyone as Ms Nagle's marriage ended, extended family struggled to assist and Victor's big sister Annabelle, now 8, also felt the impact.

When a GP witnessed the toddler's ecstasy over eating hair, referrals followed and eventually a National Disability Insurance Scheme plan.

Victor's mother admitted the NDIS proved difficult to understand during their first year and she really needed to draw on her background as a nurse and think clinically.

"If you were the team leader for somebody with a disability or sickness, what would you do?" she said.

"Once I got that mindset and looked at myself as the captain directing the ship, and the OTs and speech therapist and psychologist were behind me, but I had to be pushing where the direction was going for Victor's goals.

"Once I got that, we just started steaming ahead."

And not alone, with Intereach local area co-ordinator Jane Sinclair helping prepare that initial plan when the family seemed at its lowest.

"Mum and I, the first interview, we were broken, completely broken ... the wheels were going to fall off," Ms Nagle said.

"We went over time, we cried, she just listened so openheartedly to us and was so compassionate."

Allied health therapists at Noah's Ark in Albury also support the family, with key worker and occupational therapist Amy Kindellan the primary point of contact.

Ms Kindellan said the past two years had brought changes across all of Victor's developmental domains.

"I've seen his ability to participate more and be included in daily activities that are important and meaningful for him, from increasing his independence in dressing to visiting the park safely with his family," she said.

"When I think about Victor's progress, I think about his family and their ability to take a strategy or idea and make it their own, and how that has directly impacted upon how quickly he has progressed.

"Every day we are welcomed in to the lives of the families we work with, and having the opportunity to learn and grow as a therapist alongside a family, such as Victor's, is truly a privilege."

Much of Victor's learning takes place in the form of a game, for example his recent haircut came after about five months of careful preparation.

Ms Nagle said her son had time to adjust to a chair being outside, a broom sweeping the ground underneath it and the sound and feel of the low-noise clippers before any cut was attempted.

"We did the haircut, and he actually let us and helped with a part of it, sweeping up the hair and putting it in the bin and he didn't try and eat it," she said.

"He didn't have a meltdown, he got his hair cut, and it was just like, 'I can't believe that', we've got to the point where he is safe because he's not eating the hair.

"I cried tears of joy."

Ms Kindellan said typically an NDIS plan was reviewed every 12 months, allowing participants to reflect on the progress made and prepare for the future.

"It is difficult to predict too far ahead as we know that children are always growing and changing," she said.

Victor has now made good friends at community day care and earlier this month celebrated his fourth birthday with a party of eight.

Ms Nagle, who herself works part-time as a disability support worker, can now see a brighter future for her loving, affectionate son.

"I feel like I have the tools and the support to deal with whatever comes up with Victor from now on," she said.

"Life can be hard, but I'm so blessed to have him and Annabelle."