IT has been a good year overall for Dáithi MacGabhann and his campaigning family as they look forward to a new one that will bring into effect a law they worked on bringing in for so many years. John Breslin reports.
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THE year began as the family dealt with the heartache of losing a loved one and fears Dáithi’s Law on organ donation may fail to pass because of the collapsed executive. As it happened, the law, which introduces an opt out organ donation system in Northern Ireland, was passed and will come into effect in the spring.
While the loss of his “powerhouse” granny Frances Smith near the end of last year was a big blow to the Ballymurphy family, they welcomed a new addition this summer, baby brother Cairbre in June.
Dáithi, on the waiting list for a heart transplant for four and a half years now, celebrated his sixth birthday in October with a trip to watch WWE Live at the SSE Arena. He suffered breathing problems.
“It is just a reminder of just how sick he is and how strong,” said his father Máirtin. “There have been a few scares this past year, in and out of hospital.”
Dáithi's wait to receive a transplant is one of the longest for children in the UK and Ireland.
“Part of the reason is because he is such a fighter, because he is doing OK.” Máirtin explained, adding those children not as strong and sicker will move ahead of him.
Current organ and tissue donation law is an opt in system where someone has to actively join a register. The new one automatically puts a person on the list unless they opt out, though it is the soft version where the family of the deceased still has a say following a death.
This past year, Dáithi, mum Seph and Máirtin have been working with government agencies raising awareness of what the new law means.
“Organ donation is all over the place, part of the campaign of normalisation of organ donation," said Máirtin.
The loss of Frances meant “it was a really hard start to the year. She was given the all clear but came back and she died at the end of October, aged just 55. They were dealing with the loss at the same as the passage of Dáithi’s Law was “in a kind of a limbo” following the collapse of the executive.
“It was very uncertain, very worrying time,” says Máirtin. But the sight of former First Minister Paul Givan name checking Daithi in his resignation speech as he talked about individuals who had impacted him most during his term was a boost.
“Not many a DUP minister will single out a child from Ballymurphy,” Máirtin joked. It passed just days later in February.
Over the year there have been many enjoyable moments, said Máirtin. Dáithi has cemented his position as a key member of Antrim GAA, big supporters of the Donate4Daithi family campaign, and was co-coach of the Belfast Giants for a day.
Máirtin and Dáithi travelled to London just a few weeks ago to accept the Outstanding Contribution Award at the British Heart Foundation’s Heart Hero Awards 2022. He met, among other celebrities, the former Newcastle United striker David Ginola.
When the new law does roll out, it will be the proudest moment and the culmination of a campaign that began almost as soon as Dáithi was placed on the organ donation list in June 2018.
Máirtin admitted to becoming somewhat obsessed as he embarked on a quest to find out all he could about organ donation and the law.
"During this time, there were many sleepless nights reading report after report," he said. Then it was action and a vow to raise awareness and normalise organ donation.
"We started in west Belfast but the power of his story took this much further. People wanted to hear. It went all around the world."
Máirtin quickly saw the potential to bring real change by opening out the campaign to changing the law.
As at the end, so at the beginning, there was no functioning government. Máirtin and Seph went local.
"We went to the councils and began gathering support from the parties. When the executive was restored we were ready and waiting."
Stormont representatives knew all about the campaign. It was on the agenda of the second meeting of the health committee.
On the advent of organ opt out, Máirtin is clear: "This could be a life saver even if it maybe takes a few years to see the benefits."
