Ryan Tubridy stepped aside to let a toddler take over the presenter's chair, once he was done with the business of interviewing his parents. 3-year old Ruairí had worn his black Motorhead t-shirt for the occasion and he balanced the studio headphones on his head like a pro. Ruairí's Mum and Dad - Pauline Cullen and Brendan Maher - made the journey from their home in Athy to introduce their two boys; Ruairí and his 8-month old brother Fiach, and talk to Ryan about raising two children with special needs.

Pauline and Brendan spoke to Ryan about coming to terms with their eldest son's diagnosis of Down Syndrome with a heart condition; followed by the discovery that their second child was also born with Down Syndrome, with even more serious health complications than his big brother. The couple are honest about how difficult things have been, but their focus is also on raising awareness of the challenges they face, as well as the enormous support they they have received from their family and the wider community in Athy. As Pauline says,

"What we really wanted to talk about today is all of the help that we’ve been given."

They describe the warm embrace of their local community, where Ruairí is treated like a celebrity when he’s out and about with them in Athy. The talk about the friendships they've forged with other parents of children with special needs and the kindness of strangers in supporting them with hospital visits and the day-to-day home care for their kids.

Both Ruairí and baby Fiach have spent long periods of time in hospital, due to heart and breathing problems. Ruairí has peg surgery coming up and Fiach is due to have heart surgery soon. When he ws born, Fiach spent 60 days on life-support. He also has sleep apnoea; a chronic respiratory condition which means he sleeps connected to a CPAP machine. With only five nights reprieve in the past two years (provided by the Jack and Jill Foundation) Ryan wondered what kind of strain this is putting on the couple and their relationship? Pauline says, yes, it’s been hard, but delays in service provision make things even harder:

"It’s such a test on a relationship. The test, as well, because we were awarded a 7-week package, because Fiach’s on a sleep apnoea machine at night time. That still hasn’t kicked in - it’s just a bit of a mess, with the nursing situation in Ireland at the moment."

Dad Brendan is a trained nurse, and has given up his job to care for the boys and Pauline divides her time between her job in social care and being a mum and a carer at home. Like every couple, they have finite resources and their children need access to a range of medical and educational services, some of which are in short supply, Brendan says:

"The network disability teams are in disarray – they are so short-staffed. We’re struggling for occupational therapists, we’re struggling for SLTs – speech and language therapists."

Ryan asks when was the last time either of them slept a full night’s sleep? Pauline says it was about two years ago. They don’t get any regular breaks or nights off, as both boys need care from a parent each during the night, as Pauline explains:

"No, we don’t get any breaks. The only break was my Mam’s funeral. Brendan’s sister took Ruairí for the night – It was the first night I got away, two years ago."

Pauline and Brendan are very busy, to put it mildly, but they are also focussed on 'silver linings’, as Ryan puts it – like their upcoming wedding and a visit from Pauline’s sister:

"My sister is coming back from New Zealand, the other sister, and she’s meeting my children for the first time, so I can’t wait for that."

A friend of Pauline’s has set up a Gofundme page for the family to raise money for the ongoing costs of taking care of Ruairí and Fiach. Pauline says that the local support has been brilliant:

"My friend Sharyn has set up a Gofundme page. The love and the community spirit in Athy and Kilkenny – I can’t get over it. Our little creche set up a pyjama day for us."

Brendan says total strangers have chipped in to help them:

"A lady in Wicklow, who we don’t even know, raised €600 for us in her café. It’s grown exponentially – it’s been amazing."

Pauline and Brendan have got to know other parents with children who have special needs, as they meet frequently in hospitals or are involved in the same charities and support groups. The couple value these friendships with mums like Aisling McNiffe, and Brendan says they are also inspired by how they advocate for their children:

"It’s wonderful mothers like this who are championing the cause for their kids. And they’re not going to go away, so I just hope the HSE will listen to them."

Listen back to the full interview here.

Details of the Gofundme page set up by Brendan and Pauline’s friend Sharyn can be found here.