NOAH COLLINS

FORMER café owner Jonny Collins, 36, and his wife Rachael, 31, a geography teacher, live in Lisburn. Their son Noah is three. He says: ‘RACHAEL and I went to the evening with Rory McIlroy on Tuesday [July 4] and our son Noah starred in the two-minute video they showed about the Rory Foundation. My wife was in tears but it was lovely. You need more people like Rory, heroes who can put money into these amazing charities.

We didn’t know that Noah had complex needs until a few months before his first birthday. He ended up in hospital for five weeks before we got a diagnosis: a rare genetic condition called spinal muscular atrophy (SMA) which basically means his spine isn’t making protein.

He’s an absolute wee fighter, he’d light up a room. Mencap has been a real lifesaver for me and other families. Without the funding the likes of what Rory does, where else do you go? Everything costs thousands.

Prior to starting at Mencap last October, Noah was housebound. There he gets sensory play, physio, speech therapy, arts and crafts .

That night my son took ill, Rachael and I had a new house, a mortgage and two wages. I had to pull the shutters down on my café the next day and become Noah’s full-time carer, for which I get an allowance of £62 (€70) a week. When Noah got into Mencap, it allowed me to begin a computer programming course.

Noah and I missed Rory the last time he visited, but he brought little gifts for all the children.’