‘This is our life now and not in a bad way’

OISÍN O’NEILL likes routine, hurling, helping out on the farm and eating low-fat crisps on a Friday.

In this respect, he is no different from most kids. If, at a glance, you were asked to spot what you thought might set him apart, it’s likely his Nordic blonde hair would be your answer. But dig deeper, and beyond this superficial distinction you will find a number of very singular qualities not usual in most eight-year-olds.

Oisín is “different” because he has a syndrome which most of us are either blissfully ignorant of or badly briefed on. The common response to a mention of Prader-Willi Syndrome (PWS) is “Isn’t that the one where the kid can’t stop eating?”.