Today marks the second anniversary of the passing of our Founder Jonathan Irwin. We recently met with his son Phonsie, who spoke about what his dad and Jack and Jill means to him and how he wants to help continue the legacy which all began with his brother Jack.
“Growing up with a sibling who has complex medical needs shapes your world long before you have the words to describe it. As a small child, you don’t know any different. It’s simply the life you know. I was three or four when my baby brother Jack was born. At first everything seemed fine, Jack arrived healthy and well but complications soon followed, leaving him with a severe learning disability and complex medical needs.
As a little boy, I remember thinking it was perfectly normal to live in a house where nurses came and went at all hours. Normal to wait, in a way, for my parents’ attention tugging at a sleeve or a trouser leg while they navigated the intense, relentless care Jack required. That was just our rhythm as a family.
It’s only with adulthood that perspective sharpens. After Jack passed away, and as I grew older, I began to understand the extraordinary strength it took for my parents to make the choices they made. My dad, Jonathan Irwin, was a dynamo, a force of nature. I came to see how passionately he spoke about those early days the trauma of Jack’s birth, the warnings they were given and the advice from professionals at the time that suggested bringing Jack home might damage their marriage or overwhelm the rest of us as children.
However, my parents disagreed. They said no and decided that Jack would come home to live with us, surrounded by love and not left behind in a system that couldn’t support him. And while that decision was powerful, it wasn’t easy. They were processing their own heartbreak while juggling work, launching a new business and raising a house with small children.
Everything changed the day a local lady offered to help by providing nursing care. It gave my parents a moment to breathe and became a lifeline. It was that which sparked something in my dad. Despite his own grief, he realised that if we needed this support, countless other families must need it too. And so, he channelled his pain into purpose. He began fundraising, raising his voice, calling out the complete lack of services for families like ours. From that determination, the Jack and Jill Children’s Foundation was born.
Since 1997, Jack and Jill has supported more than 3,000 families across Ireland families caring for children who like my brother Jack need help with care in their own homes.
When my dad passed away almost two years ago, I remember thinking how lucky I was that I never had to look far to find a hero. He was right there with his courage and creativity and his refusal to accept “no” for an answer. I grew up hearing again and again how people were struck by the way he spoke. When he came to my school, I watched the room fall silent with everyone absorbed in his words.
People always told me how eloquent he was, how powerful his message was and how deeply they were affected by Jack’s story. Now that Dad is gone, I feel ready to give back in my own way, in honour of both him and Jack. I would like to stay connected to the organisation that is, quite literally, part of my family story.
So, this year, my colleagues at Barden and I are taking on a challenge that fills me with both excitement and trepidation, a sea swim in Cork and Dublin, plunging into the freezing Irish waters. Dozens of us will be stripping off and throwing ourselves into the cold sea all to raise funds and awareness for Jack and Jill.
And while I try, in my own way, to follow in Dad’s very large footsteps, I’m fairly certain he’d draw the line at jumping into icy water. Warm weather and sunny climates were much more his style!
However, I’m doing it anyway, because I know better than anyone what in-home nursing care and respite mean for families. I know what it meant for mine, and I know that today, there are parents across Ireland walking the same road my mum and dad once walked who need the same lifeline that Jack and Jill provided to us.”
To help continue Jonathan and Jack’s legacy of providing these invaluable services to families all across Ireland, please donate below.
