An Irish couple is appealing for help to get their son life-saving surgery in the US.

Two-year-old Joey Conway developed invasive Group A Strep in March of last year, which left him on a ventilator in intensive care at Crumlin Hospital for two weeks.

He developed a serious sepsis infection which saw his stomach expanding so much, doctors had to put in a drain and leave it there for five days.

Joey spent a further seven days in hospital being closely monitored before he could return home to sister Molly and brother Jordi.

Image: Supplied

Last January Joey was diagnosed with Portal Vein Thrombosis (PVT), which has led to a serious and rare condition Non-cirrhotic Portal Hypertension.

It means Joey has a clot in the portal vein to his liver. He is prone to infection and anything could wipe him out completely.

Joey’s mother Natalie told Lunchtime Live the whole family is on edge all the time all they try to support Joey through the ordeal.

She told Andrea the most life-threatening symptom he faces is the risk of developing varicose veins in his oesophagus.

"The risk of that is if they bleed, he could literally bleed out on us,” she said. "On the first bleed there could be a 40% chance of fatality with that.

"There's no warning signs of that, so I suppose as parents we're living on the edge [wondering] is he going to cough, is he laughing too hard?

"Is it a matter of when not if and I suppose what we're trying to do now is to try and avoid that".

Joey, Tommy and Natalie. Image: Supplied

Joey began a management programme for his condition ins August 2023 – going under general anaesthetic for an endoscopy procedure to band the varices developing in his oesophagus.

He currently has to undergo this treatment three to four times a year with no improvement to other symptoms or his condition.

This is the only treatment available for Joey in Ireland.

There is, however, a Meso Rex Shunt/Bypass surgery that can be done in the US at a cost of €330,000.

The five-hour procedure would bypass the obstruction and restore normal portal flow to Joey’s liver.

Natalie said Joey’s condition means he finds it hard to fight everyday infections.

"He's been through a lot... but we're trying to do our best for him now," she said.

"We just want to try and do our best for him and try get this surgery in Chicago... there's a 90% success rate with it if it's done on the healthy system that he currently has".

'Every surgery comes with risks'

Natalie said they want to take Joey's sister and brother with them to the US.

"We have to go over there, there's a week of investigations and scans to be done," she said.

"The surgery then, which is about a five-hour surgery, it is a big surgery.

"Obviously every surgery comes with risks as well, but it's better than what we're living with now and what he's living with now.

"We have to weigh it up and this would be for the greater good for him.

"Post-op would be at least 10 days in hospital and then we'd spent anywhere from seven to 10 weeks after that as an outpatient, in and out every couple of days, just to check the bleeding inside."

Molly, Joey and Jordi. Image: Supplied

Natalie said Joey hasn't hit several milestones in his development.

"He's a typical two-year-old boy in one sense," she said.

"He knows his own mind, he shouts, he gives his sister hell - but on the other side Joey still isn't walking, he hasn't reached some of those milestones of speech and language and gross motor development.

"He's not walking, he didn't crawl for ages.

"His belly is quite big because of his big spleen and liver and all that goes on with his tummy at the minute.

"That's been against him; he almost has a pregnancy belly almost in front of him.

"That's kind of inhibiting him from being able to be mobile," she added.

The family hopes to get to the US in the next six months, with a provisional surgery date for June or July.

People can contribute to Joey's fund here