A little boy was born “inside out” now spends his life hooked up to a machine 20 hours and day and going to the toilet up to 22 times a day.

Henley Mountford-Farmer, from Maidstone, required emergency surgery when he was just two years old after being diagnosed with gastroschisis as a baby.

The birth defect means his intestines were outside of his body on his stomach when he was born in August 2019.

As a result, the tot was left with less than 50% of his bowel after part of it "died" and had to be cut away during the surgery.

Henry is able to drink and eat orally but because his bowel doesn’t function properly, he’s unable to digest his food properly and goes to the toilet several times a day. Most of the time he is left passing water or acid which causes him a lot of pain.

A total parenteral nutrition (TPN) drip feeds Henley via a central line into his heart the essential nutrients and fats he isn't able to absorb from food – without it he wouldn't survive.

The litre-sized bag is in a little suitcase that Henley carries around everywhere with him as he is wired up to it for 20 hours a day.

Mum Kali, 32, said: "If he can make himself like normal, he will do that, despite the pain.

"If he is not well enough I will carry him and the bag. It's just me and him and we are very, very close - I dote on him, he dotes on me.

"Out and about, he's happy, smiley, caring, loving, cares about everything and everyone else and takes everything in his stride.

"You will never see him look sad or in pain but at home, it's: 'Mummy my tummy hurts, the pain's too much'."

Henley has multiple conditions including short-gut syndrome, ketonic hypoglycaemia, a growth hormone deficiency, multiple skin allergies, eczema, hyper mobility, enlarged liver and spleen and can’t control his body temperature, alongside PTSD from everything he has been through and still goes through.

As a result of this, he often suffers from fatigue, convulsions, dehydration and anemia.

Henley’s mum has supported his wish to “feel like a normal boy” by sending him to mainstream school, but because of his health he’s only managed to make it in for nine days as he often feels unwell or needs to go to hospital.

“Out and about, he’s happy, smiley, caring, loving, cares about everything and everyone else and takes everything in his stride,” she said.

“You will never see him look sad or in pain but at home, it's: ‘Mummy my tummy hurts, the pain’s too much’.

“Or he will be on the floor or sofa and won’t move as he is in absolute agony and won’t want to leave the house, just snuggle. It’s not nice to watch.

“Even though he’s only five he is very smart and very understanding. He knows he’s got a condition. He gets it but to the outside he just wants to be seen as a normal boy even though when he comes home he is drained, doesn't feel well and is struggling.”

In September, Henley had a surgery to try and lengthen his bowels had complications which has led to having more pain, internal bleeding and hospital trips.

She added: “Henley can’t walk much so if he’s tired I will chuck him on my back so he can see everything. If he is too poorly I would be able to get him in the garden.

“We went to Scotland last year camping and stayed a couple nights with my friend’s mum and dad who had chickens on their land.

“Henley was first of all terrified of them but the next day he was going: ‘Can I go see the chickens?’

“He fed them, collected their eggs and they were very friendly. They sat down and wanted him to pick them up. Since then all I have got is: ‘Can I have chickens?’”

His conditions mean Henley requires around-the-clock care, hourly checks throughout the night by his mum or carers who visit six times a week.

He also needs medication for the pain he is in and frequent nappy changes to make sure he hasn’t tangled himself in the wires connected to his body.

The TPN drip comes with side effects including organ damage, with some users ending up needing liver transplants.

“We have got to take each day as it comes,” Kali said. “It’s hard but as long as he’s happy and smiling that’s all I can ask for, is to see a smile on his face and make each day for him better.

"My friends and my dad live in Essex and so most of my life, I do it all on my own. You have got to be trained to deal with Henley as well and I’m the only who is.

“Where I go, he goes and wherever he goes, I do. He misses out on a lot. There’s no social life, no girls’ nights, but it doesn’t actually bother me because my whole world is him.

“I wouldn’t change it for the world; to me, he is a miracle and my inspiration.”

Kali admits she is “stubborn” and wants to try to do everything on her own but said she was “so grateful” for the support of her neighbourhood.

Kali - who is unable to work - said: “It feels amazing. I’ve only lived in Leeds Village since last May and they absolutely idolise Henley and dote on him.

“They think he’s incredible and say the same about me with everything we do. To know there are amazing people like that out there who want to do whatever they can to try to help is heart-warming.”

A GoFundMe campaign has been organised by the family’s neighbours, who wanted to help Kali and her son build Henley’s dream garden.

He would like a soft area for in case he falls as he has weaker bones, a seating area for him and his mum, a barbecue area where they can do the camping activities they liked to do before he became too sick.

He would also like a special seating area just for him next to the coop to watch the chickens.