Dáithí Mac Gabhann’s parents usually can’t get him out of bed for school on Monday mornings.
But at 7.30am on Monday, the six-year-old Belfast boy, who needs a heart transplant, was wide awake when he heard his mother say that the UK government had released a statement on a stalled organ donation Bill – named after him – being passed.
“Dáithí shouted from his bedroom: ‘Really? Does that mean that Dáithí’s Law is going through?’” said Seph Ní Mhealláin.
“When we shouted up, ‘yes, that’s what it means,’ he leapt out of bed and started jumping for joy.”
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It is a story that has dominated the North’s news agenda for the past month after it emerged that an organ donation Bill approved by Stormont a year ago could not be enacted due to the Executive’s collapse.
Last week Dáithí and family travelled to Stormont to watch a one-day Assembly recall fail in its bid to enact the law due to the DUP’s boycott of the powersharing institutions over the party’s opposition to the Northern Ireland protocol.
The DUP insisted that Northern Secretary Chris Heaton-Harris had the powers to push through the legislation; Mr Heaton-Harris said the quicker route was the Assembly.
The recall came just days after Dáithí – given just a 10 per cent chance of survival when he was five days old after open heart surgery – was flown by air ambulance to England for an investigative procedure as his condition has deteriorated since Christmas.
“My son was being used as political leverage,” Máirtín Mac Gabhann tells The Irish Times.
“He was heartbroken when he found out Dáithí's Law was delayed. We had to tell him the truth. We can protect him as much as possible but Dáithí deserves to know what’s happening.”
[ ‘Dáithí’s Law’: DUP vetos attempt to restore Stormont to pass organ donation lawOpens in new window ]
On Sunday evening, Mr Mac Gabhann received a text message from a senior civil servant asking if he “minded” taking a late phone call from the Northern Secretary.
During their conversation, Mr Heaton-Harris told him he was “incredibly moved” by their son – he met Dáithí and his parents last month – and five-year campaign to overhaul the North’s laws on organ donation. He confirmed the UK government would intervene in the “exceptional” case.
“I wasn’t expecting the call, it was out of the blue,” said Mr Mac Gabhann.
“I told Chris Heaton-Harris that I didn’t really blame him for trying to use our Dáithí – he’s a very powerful human being. But it’s not right. Politics is a dirty game, it doesn’t mean I’m okay with it. But I can understand it, to be honest.
“I put the phone down and me and Seph were jumping up and down screaming with excitement in the house. We’re overjoyed.
“We feel as though we have had to again move mountains to achieve this, but we are very proud of ourselves, and of Dáithí.”
Mr Heaton-Harris confirmed he will table an amendment to scheduled legislation going through parliament this week that will incorporate the North’s new organ law.
It is expected to come into effect by summer.
“It was supposed to be in by spring 2023 but believe me, I’ll take it being passed in the summer with open arms,” Mr Mac Gabhann adds.
The law will 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.
The Northern Secretary stressed that MLAs should be taking such decisions.
“I have been incredibly moved by Dáithí's story and his family’s dedication,” he said in a statement. “I know that the party leaders in Northern Ireland feel the same.
“In recognition of just how important this issue is, I have decided to bring forward an amendment to the Executive Formation Bill which will allow for the overdue legislation to be made by the NI Department of Health and see this change to the law become a reality.
“I would like to reiterate that, if the amendment is selected, the UK Government’s intervention here is exceptional. Decisions such as these should be being taken by locally elected decision-makers.”
On Tuesday morning, Dáithí and his family will travel to London in advance of the debate on the Bill on Wednesday.
“We’re going over to see this gets over the line. We’re not taking our eyes off the ball,” said Mr Mac Gabhann.
“We’re hopefully going to bring Dáithí to the Harry Potter studios. He loves Paddington and he’s really excited to see Big Ben; he doesn’t realise he’s actually going into Big Ben. He’s going to parliament – this is his legacy.”
