The sound of a breathing machine is the first sign a docile Archie is lying in the room.
Propped up with cushions and blankets galore on the couch, the little man looks the picture of comfort.
But I wonder if Archie thinks the same.
The 3-year-old has Aicardi-Goutieres syndrome, a rare genetic condition leaving him physically and intellectually disabled.
As I sit down, his mum, Grace Arabin, tries to stir him.
"Are you going to acknowledge there are people in the room? We've got visitors."
But Archie has other plans as his eyes close and he drifts off to sleep.
I don't mind.
Sitting next to his gorgeous self, with curls coiling around his head, it's hard not to take in his beauty. It really is a privilege to be spending my Friday morning with him.
This is more or less a normal day for Archie.
He is no longer able to move by himself. He is nil by mouth and requires feeding through a nasal tube, plus his Airvo machine which pumps air into his lungs 24/7 needs to be plugged in.
This means it's rare to see Archie off the couch at this stage.
It was when he was four months old that his mother Grace believed something was not right.
From day one the condition could be noticed, or the neurological element of the syndrome could be triggered if a baby becomes sick, Grace said.
"That's what happened with him, he got croup cough at four months old.
"I started noticing the decline."
It started a four-month battle for Grace who fought for blood tests or for a specialist appointment because "as a mother, you know when something is wrong".
"He stopped holding his head up, stopped being able to breastfed and he was losing weight.
"And then when he was about eight and a half months old he had a really bad seizure and we rushed him to hospital."
Then came the tests with a result that was confirmed with a DNA test by Grace showing she carried the gene. Archie was finally diagnosed.
"I knew there was something seriously wrong from the minute he started getting sick - but then it took so long so I kind of started accepting it in that time. Obviously, I didn't know what it was or that it would be to this extent but that's okay.
"Thank god we got an answer because people go years undiagnosed which is just torture, I think."
For the first year, Archie and Grace were in hospital almost every week. He was there so frequently he had his own room which was horrible, Grace said, but necessary.
Archie's world was riddled with chest infections along with other complications. He experienced seizures every five minutes which he has now thankfully grown out of.
But as one thing stops, another starts, Grace said.
He has dislocated hips, muscle dystonia and hypotonia - which are involuntary muscle contractions and decreased muscle tone.
At the beginning of last year, Archie started using the Airvo machine, leaving him plugged into the closest power supply but, in September, Grace was able to get a portable machine, allowing them to leave the house on the odd occasion.
"It does get very hard sometimes, watching other parents playing with their happy healthy children, watching all the things I know Archie will never be able to do.
"It took me a long time to accept the picture of our future that I had envisioned wouldn't happen but I grew to accept this journey that me and Archie are on and now I wouldn't change it for the world."
The hardest thing to stomach is his life expectancy.
While he celebrated his third birthday in December, doctors have suggested he would only live to age 3 or 4.
"It was relieving [celebrating his birthday] but also very scary that we were getting close to 4. It's alright, I try not to think about it too much."
Leading up to his special day, Archie was not doing very well. It caused anxiety for Grace and after staying in hospital for a month she made the decision to put Archie into hospice care.
Now they both can be in the comfort of their own home and rushing to hospital is a thing of the past, with a doctor and nurse available to assess him at home when needed.
"There's nothing you can really do to stop what is going to happen, and so there is no point rushing into hospital where they can't really do anything.
"It was easier to do that rather than being in the hospital, now we just chill at home."
Chuggington is Archie's favourite television show, although he often just listens as watching seems to be too much stimulation for the little man, Grace said.
Each day she ensures Archie has his necessary physio. As we talk, she rubs his feet that have now become permanently pointed.
Throughout the day Grace is constantly talking to him as Archie has started to grumble if his mum isn't near.
"If I leave the room and I'm in the kitchen he'll just sit there and growl at me and I'll be like, 'I'm just doing the dishes and I'll be in five minutes' and he stops.
"He just wants to know what I'm doing, all the time."
But it also works in her favour too, she jokes.
"He doesn't talk back and he keeps all my secrets.
"His cousins like to tell him secrets and even blame their naughty things on him too," laughs Grace.
"He has taught us all a lot."
At just 23, anyone would assume it has been a lot to handle for Grace - not that she would let you believe it.
"Like people say, my aunties especially, 'I'm glad it was you that had this baby ... it takes a certain type of person'.
"I'm not sure if that's a good thing or a bad thing but I guess I'm quite hard and always have been strong and resilient to things which has definitely helped."
Grace puts it simply: "You do whatever you can for your kids and you don't know what you can put up with until it happens."
Watching Grace and Archie on the couch, the pair look like two peas in a pod - happy and content with the moment.
She tells me there is nothing much she can do about Archie's health, so she takes time to enjoy the little things.
That's helpful, she said.
But while one day can be fun the next day is completely different.
"So it's a little bit like you're on edge all the time."
As I take a last glimpse as his curls, I hope the long weekend is nothing but fun and the sad day that will one day come is still a long way off yet.
That way Grace can make the most of all the "little things" with her baby.
• To follow Archie's journey or to make him more comfortable go to Grace's Givealittle Page
• Aicardi-Goutieres syndrome is an inherited disease that mainly affects the brain, immune system, and the skin.
• Loss of white matter in the brain and abnormal deposits of calcium in the brain leads to early-onset severe brain dysfunction that usually results in severe intellectual and physical disability.
• Additional symptoms may include epilepsy, painful, itchy skin lesion, vision problems, and joint and muscle stiffness, involuntary muscle twisting and contractions, and weak muscle tone in the torso.
• Symptoms usually progress over several months before the disease course stabilises.
'His journey was just beginning as it is for so many of us.'