| 12.4°C Dublin

Waking hours with Jonathan Irwin, Jack & Jill founder

Close

The founder of the Jack and Jill Foundation, Jonathan Irwin, said the children’s charity has had to work extremely hard this year just to “finish in a break-even position”. Photo by Gerry Mooney.

The founder of the Jack and Jill Foundation, Jonathan Irwin, said the children’s charity has had to work extremely hard this year just to “finish in a break-even position”. Photo by Gerry Mooney.

The founder of the Jack and Jill Foundation, Jonathan Irwin, said the children’s charity has had to work extremely hard this year just to “finish in a break-even position”. Photo by Gerry Mooney.

I get up at 6.30am. That is late, considering the time I used to start when I worked in Ryanair. Michael O'Leary is an early bird too, and we used to compete to be the first one in the office. Once, we even pushed it back to 4.45am. My wife, Mary-Ann, usually gets up after me, and Molly, our daughter - and the only child living with us - is up for 6am.

My bad leg slows me down a bit. In May of last year, I went in for an operation for rectal cancer and it was successful. But ever since the surgery, there is a problem with my sciatic nerve.As a result, my foot doesn't work. Now I can't drive, and I can't walk for a very long distance. To get around, I have a driver called Michael. He was a Dublin cabbie for 32 years and he's the number-one entertainment in my life.

I have a bath and then I go down for breakfast. I usually have blueberries and raspberries with yoghurt, while Molly is about to go out the door. By then, Mary-Ann is about to go to work. She is an Independent Senator, and she also runs her own chocolate business, Lily O'Brien's.

We live in a little village in Kildare called Ballitore, which was the first Quaker settlement on the island. There's a farmer next to us, so we look out at a field full of cows and a trout stream. The beauty about all of this is that we're only three minutes from the motorway.

I usually listen to Newstalk or RTE. I'm very interested in current affairs. I read the papers, and then I jump into the car and go to the Jack & Jill office in Naas. Usually, everyone comes in at 9am. It's a very close-knit office and they have all worked for me forever.

We set up the Jack & Jill Children's Foundation in 1997. I was surprised by myself, because, to me, charity was something that was for good people, not people like me. Up until then, I had worked in the horse-racing industry. I had a magnificent year in Ryanair, and then Tony O'Reilly asked me to set up the Dublin International Sports Council. They were very interesting times, and in 1997 we even brought the Tour de France to Ireland for the first time. Charity was never something I thought I'd be doing.

But then our son, Jack, was born in 1996. He had a lot of mucus and then there was a crisis in the hospital nursery. We suspect that he choked to death and then was resuscitated. After that, he couldn't swallow and he had a feeding tube up his nose. The poor little fella cried for 24 hours a day and it took 18 hours to feed him.

After nine weeks in hospital, we brought him home. There were no services to help us. We found out very quickly that it doesn't matter if you have a crisis at home, the rest of the world goes on and bills keep coming in. So, I kept working in Dublin and Mary-Ann's chocolate business was up and running. At that stage, it was in a factory in Naas and she employed 40 people. We decided that you can't put 40 people out of a job because the boss's son is sick. Mary-Ann was in tears the whole time, and we were both sleep-deprived. We had two healthy children and a dying child, and it was extremely difficult.

After three months, a wonderful lady came off the packing lines in Lily O'Brien's, told us that she used to be a nurse, and offered to mind Jack. Then other ladies from the outlying village knocked on our door with the same offer. We didn't know any of them, but they had heard our story. For the remaining 18 months of his life, Jack was nursed around-the-clock at home.

It was so much better to have him at home, and his siblings knew him. It eased the pressure, and it allowed us to spend time with our other children. Nature can be very cruel, and Jack was in pain the whole time. After he died, we vowed that no other family would have to go down that valley again and so, the Jack & Jill Children's Foundation was founded.

We deal with children up until the age of four who have brain damage, because they will need around-the-clock nursing. We were ordinary people, and tragedy came through our door and that changed everything.

A lot of my working day involves running the office and raising money. Since we started, the public has given us €55m. I think it's very important to thank people for their donations. We have 12 paediatric nurses who manage the country geographically, and we never have less than 300 children on our books. They are from all walks of life. Our nurses take on the HSE, on behalf of the families, for medical cards and care grants. In Ireland there are something like 8,000 charities because the HSE has let these people down.

We are always dreaming up new ideas to raise money. I think it's so important that if you're running a charity that you do it with a passion, and have a real interest in people. I have parents who phone me to tell me their story, and I listen because I was once in their shoes. Lunch is usually a working lunch, where I am meeting someone who can help the charity.

I get home at 7pm, and a lot of the time Mary-Ann doesn't arrive in until much later. I wait for her, and then we have dinner together. We have the most pleasurable domestic life in the evening, just talking around the table. I have decided to go up as an Independent candidate in the 2016 elections, because I am angry. I think that - like dry rot - if I can get into the house, I can do more than what I do now.

My main issues would be care, medical issues and the way carers are treated. And, of course, I will still speak out, saying that Blanchardstown is the only suitable site for the new children's hospital, which they have been talking about for 22 years.

I don't go to bed late, but then I'll read until 1am. I love trashy novels and I've always been fascinated by history. I dream endlessly, always in colour.

'Jack & Jill - The Story of Jonathan Irwin' by Jonathan Irwin with Emily Hourican, is published by Mercier Press, €16.99. See jackandjill.ie

Sunday Independent