‘There’s no cure for what Dáithí has. A gift of a new heart isn’t even a cure, it’s more for a better quality of life’

Dáithí Mac Gabhann is just home from school and ripping open a gift bag when he discovers a good luck card signed by his 28 classmates.

“Ádh mór Dáithí” is written in bright silver marker beside stickers of the Belfast Giants ice hockey team and Harry Potter.

“Look, look,” he shouts and reads out the names of his friends from Bunscoil an tSléibhe Dhuibh before telling me he’s Coach D for The Giants.

He cannot stop smiling.

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In less than 24 hours’ time, the six-year-old Belfast boy, who requires a heart transplant, will board a private “air ambulance” eight-seater plane and travel to a hospital in Newcastle upon Tyne.

An investigative cardiac procedure will be carried out on his “half a heart” to “give the answers as to why he’s declining”, explains his father Máirtín Mac Gabhann.

“Sometimes it can give you the most devastating answers. So we’re very nervous going into this,” he says.

“But we’re going over and expecting and hoping for good news; we don’t want to be anticipating anything else; if it comes it comes.

“He’s full of beans today.”

It is a year since Dáithí stood on the steps of Stormont punching the air after MLAs voted to pass a law overhauling the North’s organ donation system.

Named Dáithí’s Law after a high-profile campaign by his parents, the legislation is at the centre of a major political row as the collapse of the North’s powersharing government means its planned implementation this spring is stalled.

It is a cause that has united all five political parties at a time when the DUP refuses to enter the Executive until its concerns over the Northern Ireland Protocol are addressed; party leaders wrote a joint letter to Secretary of State for Northern Ireland Chris Heaton-Harris last month urging Westminster to intervene.

On February 1st, Mr Mac Gabhann and Daíthi’s mother, Seph Ní Mhealláin, met Mr Heaton-Harris and asked him to act by using UK government powers that changed the North’s law on abortion and same-sex marriage during previous Stormont stalemates.

Born with Hypoplastic Left Heart Syndrome, the rare congenital defect means the left hand side of Dáithí's heart is extremely underdeveloped.

An additional secondary piece of legislation concerning what type of organs are affected by the bill – “a crossing of the ‘T’s and dotting of the ‘I’s”, according to Mr Mac Gabhann – must be signed off.

“It was supposed to be a 30 minute meeting; it lasted two hours,” he says.

“I did say to the Secretary of State that if anybody deserved to see this law go live, it was Dáithí himself; I also said that if anything was to ever happen to Dáithí, and he would never see this law live, I would never forgive him.

“He spoke to us as a father and as a family man and gave us some options.”

The law would bring the North into line with the UK by introducing a soft ‘opt-out’ system which means people automatically become donors after their death unless they state otherwise.

[ DUP refuses to drop block on Stormont Assembly sitting over organ donor law ]

We meet on a sunny but chilly Tuesday afternoon and Daíthi is wearing his favourite fluffy pyjama top over his school uniform.

Crouching on the livingroom floor – guarding his presents of crayons and chocolate – he draws a picture for his baby brother, Cairbre, who is attempting to climb out of a high chair beside him.

“I’m drawing Cairbre on top of my shoulders with hearts and flowers. He tried to eat my Valentine’s Day card I made in school, it was red,” he says.

Bags are half-packed in the hall of the family’s west Belfast home ahead of the early morning flight.

An ambulance – and his mum – will be waiting on the other side to transport them to the Freeman Hospital.

“The reason it’s such a worrying procedure for us is that this is the same one he got when we found out five years ago he needed a heart transplant,” adds Mr Mac Gabhann.

Rocking seven-month-old Cairbre to sleep below a framed copy of the landmark law – known as the Organ and Tissue Donation (Deemed Consent) Act (Northern Ireland) 2022 – he is flanked by Dáithí playing a Nintendo Switch console.

His is asking his father if he can watch “Harry Potter 4″, the “scary one”, as his mother is away for the night “and doesn’t let him watch it”.

“I’ve only got to number three,” says Dáithí.

At just five days old, his parents were told by an ICU consultant in the Evelina London Children’s Hospital that he had a 10 per cent chance of survival following open-heart surgery.

Born with Hypoplastic Left Heart Syndrome, the rare congenital defect means the left hand side of his heart is extremely underdeveloped.

Recalling how emotional the consultant became when he pushed him on the statistics for his son’s survival, Mr Mac Gabhann reflects on his progress:

“For Dáithí to last this long is nothing short of incredible. Although he is on the decline, he still remains stable,

“Before Christmas, he was assessed for a wheelchair and oxygen at home; he is on a slow decline which was always going to be the way because he can’t get better.

“There’s no cure for what Dáithí has. A gift of a new heart isn’t even a cure, it’s more for a better quality of life and more time.”

The young couple gave up their jobs and studies to devote themselves to campaigning work over the past four years.

This should be the time that we’re actually celebrating this law, reflecting on all the hard work we’ve done and being proud of ourselves. But we’re not even being given that opportunity

Celebrities, Irish boxers and other stars, including Hollywood actor Jamie Dornan, were among those to back the Donate4Daithi drive that encouraged more people to join the NHS organ donation register while demanding a change to the North’s laws.

When Stormont was run by civil servants during its previous collapse between 2017 and 2020, the first politician the couple lobbied was former Minister for Health, Simon Harris.

Last November, Cabinet approval was secured for similar opt-out organ donation legislation for the Republic.

Delayed several times since 2016, it must be passed by the Oireachtas before it is enacted.

“When we met Simon Harris it was at a time the South was a lot more advanced with its bill. The delays happened and it turned out the North was then ahead,” Mr Mac Gabhann adds.

“But now, with the current health minister Stephen Donnelly talking about bringing this in again, I think it could go full circle and the south could have it before we do.”

The father of two speaks of the family’s “frustration” at the political deadlock but is optimistic that amendments can be introduced to a separate Westminster bill – the Executive Formation bill that delays the Northern Secretary’s requirement to call a Stormont election – and allow his son’s legislation to be introduced in coming months:

“That’s kind of our biggest hope at the minute. We hope it will have an enough scope in it to allow Dáithí's Law to go through.

“It is frustrating for us, Stormont being down, but we’re past that now. We’ve mentioned being used as a political football a few times.

“The DUP made it very clear to us that they weren’t going back to Stormont by last month’s deadline. So that’s when we turned to the Secretary of State – because we thought we were being punished in a way to have such a uniting case among the five parties.

“We felt it was being used as leverage. We can understand that – but it’s a disgrace.

“I pushed the Secretary of State on how Irish language legislation, abortion legislation and same-sex marriage was brought in. We were told the UK government had to do this for legal reasons.

“I asked if he could not do it for the reasons we had spoken about. I told him this law was a beacon of hope for the organ donation and transplant community. It will save lives.”

Last Wednesday afternoon – the day Dáithí travelled to Newcastle – Mr Heaton-Harris was asked by North Down MP Stephen Farry in the House of Commons if he will listen the to “groundswell” of voices urging him to intervene.

Mr Farry described the Organ Tissue and Consent Bill as “one of the casualties of the absence of the Northern Ireland Assembly”.

The Northern Secretary responded by saying he was “honoured” to meet Dáithí and his family the previous week but that the “quickest route” to introducing the law was through the Assembly.

By Thursday evening, he had written a letter to Stormont’s political leaders telling them it was within their power to recall the Assembly for just one sitting and “have this legislation in place in a matter of days”.

Enacting the bill through Westminster would be a “long and arduous process”, he wrote.

[ Orla Tinsley: I am deeply concerned about education around the organ donation opt-out system ]

Hours before the letter emerged, Mr Mac Gabhann posted a picture on social media of Dáithí in his hospital bed following the procedure, captioned: “Sitting up and ready to #FIGHT!” His father says he is now home and stable, and ”doing well”. Full results of procedure are not yet known.

The DUP signalled on Thursday it will not be returning for a one day Assembly sitting and that Westminster was its preferred route; party leader Jeffrey Donaldson confirmed he is seeking an amendment to the Executive Formation Bill to “enact regulations required for this vital legislation to become effective”.

The party is to meet on Monday to discuss its position on the issue.

At midday on Tuesday, the Stormont Assembly will be recalled in an attempt to pass Dáithí's Law following a petition tabled by Sinn Féin calling for the election of a speaker – a move that would pave the way for the legislation to be enacted. But without the DUP taking part, it cannot be carried.

Reflecting on the past five years, he told The Irish Times said there is “no doubt” their son was instrumental in reforming the law on organ donation.

“There’s been so many people and organisations campaigning about this in the past but we definitely know that Dáithí was the difference.

“Even last year, when the government collapsed a week before it was due to come in, I remember being worried that it wouldn’t get through and having a conversation with a senior director in the Department of Health.

“He said to me: ‘We have Dáithí, Dáithí is the difference ...’ Dáithí was totally the difference; without him and our campaign, I’d say there’d be no chance we’d be sitting here talking about this right now.

“But this should be the time that we’re actually celebrating this law, reflecting on all the hard work we’ve done and being proud of ourselves. But we’re not even being given that opportunity because it can’t go live; we’re still fighting.”