Rory Barrett might not have had the best start in life – the youngster who was born without kidneys was recently described by a specialist in London’s Great Ormond Street Children’s Hospital as being “not one in a million, but one in several million”.

Yet Rory, who will celebrate his ninth birthday next month, is a lively, lovely boy. He isn’t into small talk but is the class clown in the city’s Scoil Iognáid, where he attends primary school. He also won the Gaeilgeoir na Seachtaine award in class recently, despite his parents having been told by ‘an expert’ some years ago that he had an IQ of less than 70.

Fair enough, Rory didn’t have the best beginning in life. But he has been lucky in having parents who mightn’t fancy being described as amazing – but who are.

Today, Rory, whose very survival is nothing short of a miracle, has a functioning kidney, which was donated to him in November 2007 by his father, Niall.

However, there are still hurdles to overcome and there’s no better woman to have in your corner for the ongoing battles than his mother, Ann Brehony.

“Absence of choice is a great thing,” she says with a laugh over tea in the kitchen of her home in Fr Griffin Road. Ann has made countless pots of tea in this room in the past eight years, where she has met with health service professionals to discuss Rory’s needs, or availed of friends’ listening ears when the going got tough.

Rory is their second child; the couple also have a daughter, 11-year-old Jess who is “fantastic”, according to her mother.

He initially had kidneys while he was in the womb, but after 20 weeks, they clotted off and nobody knows why, Ann explains. She and Niall knew something was up after about 30 weeks, “because I had no fluid”.

After he was born, batteries of tests were carried out on the infant, but all were inconclusive.

Initially, he was in the Intensive Care Unit in Crumlin and then they started on dialysis at home in Galway, which worked for about a year, with regular visits to Crumlin. Because there was no dedicated renal ward there at the time “he got every infection going”.

At the end of his first year on dialysis Rory got peritonitis and from that septicaemia, which meant an end to home dialysis.

From then on, he and his parents made three trips a week to Temple Street Children’s Hospital, rising at about 4.15 to get the ‘red-eye’ flight from Galway airport. Soon the pilots and airline staff knew them and Rory, who is a character, was a mini-celebrity on the flight.

“In a funny way, going to Dublin was easier, because it wasn’t as isolating as being at home,” Ann says. Still, it was tough, especially as they wanted to ensure their toddler daughter, Jess didn’t miss out on her childhood.

“I used to count hours of sleep like other people used to count calories.”

And there were many scares. In his early years, they had to rush Rory to hospital in Dublin several times in the middle of the night, and there were fears he wouldn’t survive. But he has defied the odds and continues to do so.

“We are lucky in the battles we have had that both of us have been able for them. Also, we both worked in production and that’s an advantage, because you need to have a schedule,” says Ann, who in a previous life worked in the film industry as a production manager.
Niall, meanwhile, works with the Saw doctors, which involves a lot of travelling, so organisation is vital.

Ann has written an amazingly honest blog about Rory’s life, his milestones and difficulties and achievements, which was nominated for an Irish Blog award in 2010.

She takes the reader on an amazing journey – one of optimism, courage, hope, anger, humour, exhaustion, and love, in her battle to ensure that Rory can live up to his potential and that any other child, who is born with the same condition, will not face the same difficulties he did.

For more, read this week's Connacht Tribune.