Samuel Hastie was two-years-old before he could sit up by himself.
It was a milestone that should have been notched up when the now-6-year-old was a baby.
His parents, Angela and Vincent, knew "something wasn't quite right" but it took 14 months before he was finally diagnosed with a severe form of Duchenne's Muscular Dystrophy, a muscle-wasting disease which also sees sufferers have problems with motor skills such as running and jumping, have frequent falls and trouble climbing stairs.
The weakness progresses quickly and breathing and heart disease usually start by age 20, leading to heart failure.
Given Samuel suffers an aggressive form of the disease, he's not likely to make his 20s.
Hastie said by the time Samuel turned 2 1/2, he stopped eating.
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But it wasn't voluntary, it was the affected muscles giving way.
"That's the way that his muscles were deteriorating, there's no other reason why he would stop eating, other than its Duchenne's related.
"Even now, he does eat the odd thing but he's tube fed 90 per cent of his diet."
Samuel learnt to walk at age 3, independently, but he was currently 90 per cent wheelchair dependent.
He's in his chair full time while at school, for his own safety, as he falls easily.
Some Duchenne's sufferers could catch themselves before they fall to the ground, but Samuel didn't have the strength.
Hastie said it had worsened at home to the point where she and husband Vincent were now contemplating keeping him in his chair full-time there too.
He is currently falling on his head about three to four times in the three-hour period between getting home from school and going to be bed at 6pm.
"It's just the way he's progressing. Even his neurologist has said he's one of the most severe."
Adnz liam is on task with things like picking up toys for Samuel. Working as a team💕🐕👦
Posted by A little boy with a terminal illness on Thursday, 18 July 2019
The doctor had told them that Samuel had been having symptoms of a teenage Duchennes sufferer since he was 5.
Hastie said most boys could live up until they're about 30 but they'd been told that Samuel would be lucky to make "late teens" due to his aggressive progression.
Samuel, who turns 7 in January, can't breathe, eat or sleep unaided.
He began talking at age 4 .
What had given him some relief, was Liam, a Labrador from Assistance Dogs NZ.
It has given him not only a new level of confidence, but also independence and contentment.
Liam has been part of their family for the past 12 months.
While they were given the dog for free, they are now trying to help fundraise for the charity with a Givealittle page.
Liam was trained to do everything from wake Samuel's parents if they're needed while asleep, to picking up toys he's dropped from his wheelchair.
Liam not only helps Samuel, but also Lukas, his 8-year-old brother, who has been diagnosed with autism and ADHD.
"Liam fetches help when Samuel asks for it. For the [sleep machine] if that beeps at night, he will come and get us ... he's generally pretty good at picking up when its needed."
Lately he'd been waking them by laying his head on her husband's arm, she said.
Liam goes to bed with Samuel about 6pm each night, however once he's asleep Liam will get up and socialise with the rest of the family before heading back to bed again.
One of the symptoms of Duchennes is tiredness. When he was younger, Samuel would sleep up to 18 hours a day. Now it is about 13, she said.
The pup also helped calm her sons when out in public. Prior to getting Liam Samuel used to get anxious when they go out, but that has stopped since.
Next year would be an exciting one for Samuel because Liam turns 5 - and that means going to school with Samuel.
It was a prospect the family are grateful for to Samuel's school - Roydvale School - for being open to and helping make it happen.
*The family also have their own personal givealittle page here