THE "very proud" parents of a five-year-old boy who became the face of a campaign to change the law on organ donation will today witness a landmark bill being passed.
In the three years since their son Dáithí was placed on a transplant list for a new heart, Máirtín Mac Gabhann and Seph Ní Mhealláin have worked tirelessly to raise awareness and bring Northern Ireland legislation into line with Britain.
Relentless lobbying of politicians, fundraisers, and social media drives have culminated in today's event at Stormont, where the final stage of an organ donation bill is expected to be pushed through by Assembly members.
The new 'soft opt-out' system means all adults in the north will automatically be considered an organ donor after their death unless they recorded a decision stating otherwise.
Fears that the collapse of the executive following last week's resignation by DUP First Minister Paul Givan could scupper the move gave way to relief after it emerged new rules in Westminister meant that Assembly legislation already underway would remain unaffected.
As Mr Mac Gabhann picked his son up from school yesterday, he told The Irish News they were "happy and nervous" ahead of travelling to Stormont to watch the bill's final passage.
"But most of all, we’re very proud. We’re very proud of Dáithí," he said.
"There have been other charities and organisations campaigning for this but we do think Dáithí has made the difference.
"When we started we were told there was no chance of this happening and now it’s happening tomorrow.
"It failed at committee stage last time and then there was no government after Stormont collapsed in 2017, so no-one wanted to make a decision. By the time we had a government back, they were saying it would be nearly impossible to get it through in this mandate."
In June, Paul Givan gave executive approval to allowing the bill to progress after the DUP initially failed to back it.
"When we first met with the DUP, they said it wasn’t a party matter, it was an individual matter. They were the only ones who didn’t support it as a party," added Mr Mac Gabhann.
"But I have to say Pam Cameron from the DUP was one of our biggest supporters. When she was deputy chair of the health committee we met with her and chair Colm Gildernew, we struck up a relationship with that committee and lobbied hard. They did their job and were important for us.
"Without Health Minister Robin Swann bringing it forward we wouldn’t be here. Everything has clicked into place."
Given just a 10 per cent chance of survival after being born with a rare Hypoplastic left heart syndrome, Dáithí is currently stable.
"He is okay at the moment. He lives the life of a normal wee boy but he is always going to be very sick. He doesn’t look it. And that’s the thing with heart conditions, the fight is always on the inside," Mr Mac Gabhann said.
"His condition could change at any time and we’re just so grateful that’s he here and can continue to unite all our politicians on one question."
