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'I'm getting rewards I never expected' - Jonathan Irwin reveals the positive impact of his charity Jack and Jill, set up in the wake of his son Jack's death

Jonathan Irwin started the Jack and Jill Foundation in the wake of a personal tragedy. It's a pattern of making something positive from difficult times that runs through his whole life; including now, writes Emily Hourican

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Jonathan Irwin at home in Thomastown Co. Kilkenny. Photo: Dylan Vaughan

Jonathan Irwin at home in Thomastown Co. Kilkenny. Photo: Dylan Vaughan

Dylan Vaughan

Jonathan with his wife, former Senator Mary Ann O'Brien. Photo: Gerry Mooney

Jonathan with his wife, former Senator Mary Ann O'Brien. Photo: Gerry Mooney

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Jonathan Irwin at home in Thomastown Co. Kilkenny. Photo: Dylan Vaughan

There was, at first, a great deal of nonsense talked about Covid-19 and how it doesn't discriminate; how we are all equally exposed and subject to the hardships it brings. Lockdown certainly put paid to that notion, as it became apparent that for some, enforced isolation and physical restriction were reasonably pleasant, while for others they brought immense, almost intolerable, challenges and difficulties.

In that last category are most certainly parents who care for very vulnerable and sick children, who found themselves without the usual professional support on which they depend, isolated from family or friends, and without respite. These parents were caught in relentless cycle of requirement - to be everything to their children, including doctors, physiotherapists and advocates.

In early June, Ryan Tubridy spoke to a woman called Nina on his radio show, in an interview that transfixed everyone who heard it. Nina is a lone parent caring for her child Jack, aged four, born after four rounds of IVF with seriously life-limiting conditions. Jack doesn't talk, he can't hold a book or a toy and can't walk without a frame. Nina described the daily routine of minding her son - including feeding him through a peg in his stomach, which takes a long time because he has very bad reflux, and often responding to him through the night. She admitted how frustrated she gets when she hears advice for carers such as 'take an hour for yourself, to do yoga, or watch a cooking programme.'

"I can't even talk to my family and friends or read a book," she said. "Unless someone could have come physically to my house to let me do those things, it wasn't going to happen." That, she continued, "is what Jack and Jill does for me. If it wasn't for them, I would have fallen over a long time ago."

It was a theme that emerged in so many of the conversations around the added difficulties for families with sick children - the emotional and physical lifeline provided by the Jack and Jill Foundation, set up by Jonathan Irwin nearly 25 years ago, after the short life of his own son, Jack, who was born healthy but suffered a medical episode during his first night - some kind of seizure that meant he had to be resuscitated, but not before oxygen deprivation left him with permanent damage to the brain that meant he couldn't swallow, hear, possibly see, had frequent epileptic fits and was in constant pain so that he cried all the time. "When that happened to us, we had no clue what to do," Jonathan says, "and there were no services in the country. Now, if the nightmare has happened in the delivery ward and your little baby is very fragile, the maternity team will tell you to get in touch, not just with the state services, but with Jack and Jill."

"I am so unbelievably proud of what Mary-Ann and I set up," he continues. For a man who downplays an awful lot - what he has achieved, as well as what he has suffered and been through - it's quite a statement. "What we do is very simple, it has never changed since we set it up. And I do very seriously think, not in an arrogant way, that Jack and Jill have made a remarkable difference to the well-being of very sick children. When our Jack, the little darling, was born, all he had was two hopeless parents. We loved him very much but we hadn't a clue what to do."

That was in 1996. Jack was Jonathan and Mary-Ann O'Brien's fourth child, and Jonathan's eighth; he had four sons from his first marriage, a daughter with Mary-Ann (former senator and founder of Lily O'Brien's Chocolates) and, about two years before Jack was born, twin boys, Phonsie and John; John was stillborn. After Jack, they had Molly.

Jack lived for almost two years, dying in December 1997, and the care he received is still the Jack and Jill model. "It's all about care for a very sick child," Jonathan says. "And it's all about the holding of the stability of the family together in desperate times." During lockdown, this care had to be modified of course. "Quite a lot might be talking through the kitchen window to mum and baby rather than baby on lap. Or being on the telephone every day because there were very severe restrictions on physical contact, but for our families, those nurses were there, all the way through."

Jonathan himself had what he describes as "a very fine time" during lockdown. "I counted 61 days of sunshine, sitting in the garden, reading books. I was very spoilt. We live in a gilded cage," he says with a laugh, of his home in Kilkenny. "One of the advantages is there is absolutely nobody around. As long as you behave yourself, you really are a most protected human."

And yet, for all that Jonathan talks up the pleasant aspects of his sequestration, and indeed generally, it's quickly clear that he is doing what he does - putting the best possible face on things.

The day we speak, he is just out of hospital. "I was in Tipperary for about a week. I was very sick. I didn't have to be operated on, but I was locked away for a week, and that was strange. It was only a week, but being in hospital and not being able to see people. It really was very frustrating."

Was it a sudden admission? "Yes. I adore my wife, I do what she says, and she said 'you're going into hospital'. I had been physically sick. Two years ago, I was also physically sick, that time I had a very badly twisted gut. It was very urgent that I got in there. I was operated on. This time I managed to escape with a lot of looking at my tummy and humming around, but I wasn't cut open."

In addition to his current health difficulties, there is the ongoing challenge of his mobility. Ten years ago, following an operation for cancer, he was left with something called a dropped foot, which meant he first couldn't walk without the support of a crutch or frame, and more recently means that he is in a wheelchair.

"I had a very successful operation for a tumour in my gut," he says now. "There is a great deal of terror about the very word cancer. It didn't scare me, but I was very concerned for my wife and for my children, because the word immediately strikes a graveyard knell. But I was never in any doubt, and here I am.

"The only thing was, I couldn't put my right foot on the ground the very next morning [after the operation]. And I'm still in the same position, with no use of my right leg, which is a nightmare. Losing the use of one limb is a nightmare for anybody. You get into the world of cranes and wheelchairs, we've had to put in a chair lift, but there you are. But I'm alive and otherwise well. I find that everybody suddenly becomes very friendly and good and kind. They push you, or get out of your way, or whatever. People are absolutely sweet to you."

There he goes again - putting the best possible spin on awful happenings. The thing is, he does absolutely believe it. He is a natural-born Pollyanna. Where does he think this extraordinarily positive attitude comes from? "It's a good question, but a hard one to answer. There have been certain times… to lose three sons in seven years. That was not a good time. I lost a stillborn boy, John. I lost Jack. And I remember saying to Mary Ann, 'I can take this, but if the person who writes the script in heaven, ever takes a healthy child away from me, I don't know what I'll do'. And then Sam, my 18-year-old, was gone within two years." Sam died after a fall while he was on holiday in Portugal. "That was a very bad time," Jonathan says. "There were black moments. But I am lucky to have a character that seems to have an eternal spring in it. A sort of built-in joy. I've been bequeathed this extraordinary genetic reserve by my parents that has got me through quite a few horrors."

Jonathan's father John was a reporter who covered the Nuremburg trails for the Irish Independent and TV producer of shows including The $64,000 Question and Kaleidoscope, and his mother, Pippa, an actor, appearing in films such as Went The Day Well, written by Graham Greene.

Even the setting up of Jack and Jill was a reaching for something positive to take from a terrible situation. "My first reaction, and that of Mary-Ann, was probably to sue. And oh my God, it's wonderful that we didn't. If we'd won, it was blood money anyway. Instead, we decided to go down this other route, which full of nothing but light. Because of that, Jack has been with us every step of the way. We've looked after about 3000 children and families by now, from birth to the age of four initially, and now up to the age of six."

Public goodwill towards Jack and Jill Foundation is remarkable. During lockdown, when all charities were suffering the effects of stalled fundraising, Jonathan made a televised appeal "we asked for €4, by text, and we hoped to get over €100,000, and as of today, we have almost €600,000."

He retired from any active role a few years ago - "It was a hard decision, but the right thing to do," he says. "I wasn't very happy on the first day when I wasn't going into the office any more, but I have no regrets about stepping down. I would have if I didn't have Carmel Doyle, who has taken over as CEO, and her team in place."

Since then, he has turned his attention to prisons, helping to pilot a scheme he first came across in America. "I spent 30 years trying to create this one. It's something I saw when I was travelling in America, for Goff's. I was taken to an open prison and was overwhelmed by the success of the equine division where they mixed horses with trusted prisoners, helping them to find personal confidence and change their view of the world. Horses are terrific like that. So I had this idea to try the same thing here, and every time there was a change in Minister for Justice, I wrote and said 'there's this thing happening in America, and it's a natural thing for this country to introduce into the prison service…' Well, I think they all thought I was mad. But the last one I wrote to was Frances Fitzgerald, and she saw it straight away. And I'm very happy to tell you that there is now a stable unit in an Irish prison, in Castlerea in Co Roscommon. A unit of 10 boxes. They asked me to raise a lot of money, I had to raise €150,000, to show them the horse industry was interested - and the government came up with the rest. So it's built, at last, and the horses are there. It can't do very much because of lockdown, but they are aiming to have it operational by September."

That, he says, "was my last game of life. I really feel I've done everything I could possibly have done." All this, for a man who, he says himself, "had never been a particularly charitably-minded person." In fact, "I would much have preferred to be an actor," he says with a laugh. "I made a couple of films with Grey Gowrie, at Eton, and I really enjoyed it. But that's schoolboy acting. Then I came to Trinity, where I really ran into students who could act, and I thought, 'just retire and don't expose yourself. You're quite obviously useless.' I am a born coward, and I realised certain things are not for me. I couldn't take being rejected more than three or four times. I wouldn't have the character for it."

Before we go, he tells me a story. As a child, he went to prep school, before Eton, a place in Broadstairs, Kent, when he was seven. At the end of his first year there was a school prize-giving where boys were rewarded for various efforts. Jonathan was given nothing, and then the headmaster's wife apparently intervened and said, 'I'd like to give a prize. It's to Johnny Irwin. For being the ugliest boy in school.' He was, he admits now, "unhappy. I was so stunned. Everyone else got a book. The next day when I got home to my parents and told them, they were stunned too."

It's a horrible story, bizarrely cruel. And yet he finishes with tremendous cheer. "I wish that headmaster's wife could see me now. I'm getting all the rewards I never expected. I'm enormously happy. Life is good."

www.jackandjill.ie; every €16 donation funds one hour of home nursing support, or text WECARE to 50300 to donate €4


Horses for courses: What Jonathan did first

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Jonathan with his wife, former Senator Mary Ann O'Brien. Photo: Gerry Mooney

Jonathan with his wife, former Senator Mary Ann O'Brien. Photo: Gerry Mooney

Jonathan with his wife, former Senator Mary Ann O'Brien. Photo: Gerry Mooney

Before Jack and Jill, much of Jonathan's professional life had to do with horses. Educated at Eton and Trinity College (although he didn't complete his degree), he set up a bloodstock agency which was then bought by the British Blood Stock Agency. While there, he set up the Stallion Incentive Scheme which morphed into the European Breeders Fund.

In 1974 he moved to Goffs as managing director, where he oversaw the move of the sales complex from the RDS to purpose-built premises in Kill, Co Kildare. He managed the Phoenix Park Racecourse, and introduced the Cartier Million Pound race.

In 1993, he became CEO of the Dublin International Sports Council (DISC), bringing international sporting events to Ireland, including the 1994 Women's Hockey World Cup, the 1995 Men's EuroHockey Nations Championship, the 1996 Notre Dame Vs US Naval Academy football game, and the first three stages of the 1998 Tour de France. He also spent a short period as marketing manager of Ryanair in its early days, with a brief given him by Tony Ryan: to make it the smartest small airline in Europe.

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