At 4 years old, Arky Loveridge has already been on a hell of a journey.

The Morrinsville boy is one of only two children in New Zealand with congenital athymia, which means he is unable to develop an immune system.

He is also battling Charge syndrome, a condition that includes heart defects, restriction of growth and development, ear abnormalities and deafness.

From the second Arky took his first breath, he has been working hard to beat the odds: The average lifespan of a child born with congenital athymia is about two years.

His mum Erin Loveridge said doctors even told her Arky was unlikely to leave the hospital alive.

“It was a shock. I was beside myself and just hoped there would be a light at the end of the tunnel. We were having a normal pregnancy up until 21 weeks. Our ultrasound technician then picked up an abnormality saying it might be a heart condition, but she couldn’t put her finger on it,” Erin said.

Arky Loveridge with his mum Erin, dad Nathan and sister Ruby.

“We only found out at birth, that there is far more to him.

“Arky has abnormally small ears and his nose wasn’t fully formed when he was born. He has under-developed extremities, deafness, and visual impairment; and he’s non-verbal and needs a full-time tracheostomy to help him breathe. He’s also fed through a tube.”

What got her through the tough times was Arky. “I realised, he couldn’t [get through] it by himself, I had to keep supporting this little person. He didn’t stop, so why should I?”

The challenge that came with Arky’s congenital athymia diagnosis was that there is no place in New Zealand to treat it.

“There are only two places in the world that can. Duke University in the USA and Great Ormond Street Children’s Hospital in London,” Erin said.

So the Loveridges had to make the difficult decision to fly Erin and Arky to the UK - in the middle of the Covid-19 pandemic - so he could get a thymus gland transplant which would help to boost his immune system.

Taking a child with no immune system on a commercial flight was scary enough for Erin, but to make matters worse, she had no set return date and had to leave her husband Nathan and daughter Ruby behind.

First milestone: Erin, Arky and Emma made it to Great Ormond Street Hospital in London for Arky's transplant.

“A paediatric registrar, Emma Hubbard, who had known Arky since birth, accompanied us. It was scary to leave because, at that time, New Zealand was basically Covid-free.

“We had so much equipment with us and I didn’t know how to keep the germs away from Arky, so I put a rain cover over his buggy. I was constantly worried.

“The flights went smooth, everyone was very understanding, it was more about moving through the airport. When we went through security for our connecting flight to London, they told me to get Arky out of the buggy, but I refused to do it.

“I told them why and the compromise was that they did a full pat down of Arky.”

From the airport, an ambulance brought Arky and Erin to the hospital. In July 2020, he became the 43rd patient to have a thymus gland transplant in London.

“We’re seeing positive results three years post-transplant - he now has an 80-90 per cent fully functioning immune system - but he will never have an immune system like you and me,” Erin said.

Arky Loveridge, of Morrinsville, was diagnosed with Charge Syndrome and congenital athymia.

“In saying that, we’ve had Covid through our house now and Arky didn’t get it. He catches the common cold though and might struggle a bit more than others with it.”

The family is now focused on navigating his Charge syndrome. “Arky has a lot of medical needs still. He needs monitoring via blood tests every six months for his transplant. He is receiving physiotherapy, he is tube-fed which is a longer-term thing and we have an overnight carer.”

However: “No one is concerned for the longevity of [Arky’s] life, doctors are happy with where he is at now.”

Hell Pizza’s Satan’s Little Helper programme has provided Arky with some sensory and cause-and-effect toys, an ocean wave projector and a rainbow marble game, to help with his cognitive development.

“The projector is a good source of sensory stimulation and de-sensitisation at the same time,” Erin said.

Hell Pizza's Satan's Little Helper has sent Waikato boy Arky Loveridge some special toys. Photo / Satan's Little Helper

“The wooden rolling rainbow tracks [have] helped his hand-eye coordination and core strength because it encourages him to go to his knees and reach up to play with the tracks.”

Because Arky is non-verbal, he expresses himself through an iPad.

“Arky is fluent in working an iPad... He also knows his ABCs, can count to 10 and he is slowly picking up sign language.”

Due to his health issues, Arky hasn’t had a lot of interactions with kids his age, but Erin said this was the next milestone the family is working towards.

“We’re slowly trying to become more social and break the bond of isolation, expose Arky to everyday life. We want to start taking him to exciting places, like playgrounds.”

School is also on the cards in the future. “But I’ve decided not to do it when he’s 5,” Erin said.

When asked what message she had for people in a similar position, Erin said: “We want to show people you can overcome these things, it’s just hard work. It’s a huge journey, but it’s not impossible.”

Hell Pizza’s Satan’s Little Helper programme, founded in 2016, is a charity that aims to put a smile on the faces of Kiwi youth going through (or who have been through) hell through fun experiences and life-enhancing gifts.