Organ donation bill gives fresh hope to family

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Daithi Mac Gabhann

Q Radio News/PA

The father of a young boy who has been waiting more than 1,200 days for a new heart has said the passing of proposed organ donation reforms to the next Assembly stage has given fresh hope to his family.

Four-year-old Daithi Mac Gabhann from Belfast was born with hypoplastic left heart syndrome and has been on a waiting list for most of his life.

MLAs debated a major change of Northern Ireland’s organ donation rules on Monday.

The proposed new legislation, which would mean all adults become potential donors unless they specifically opt out, will now pass on to be scrutinised by the health committee.

Northern Ireland is the only part of the UK where the opt-out system is not already in place.

Daithi’s father Mairtin, who has campaigned for the law change, said it was a “very positive day”.

He added: “This is a very important piece of legislation to my family and our campaign because my son Daithi has been on the waiting list for the gift of a new heart for most of his young life.

“Potential legislation like this gives us such hope and we believe that it betters Daithi’s chances of getting that gift, so we are just delighted, but the work isn’t done yet.”

He added: “There can be no more delays to this potential legislation. We feel that this potential law change is another step in normalising organ donation in society. 

“If you look at the countries around us, we are last to the party.

Four-year-old Daithi Mac Gabhann playing football with his dad Mairtin at their home in Belfast

However, a number of MLAs and health minister Robin Swann raised concerns that a DUP threat to collapse the Stormont powersharing institutions in protest at the Northern Ireland Protocol, could yet derail the Bill before it is passed.

Mr Mac Gabhann said: “We have no control over that and if it were to collapse we would be the first people knocking on the door again, like we were when Stormont resumed last time.

“But that doesn’t mean we wouldn’t be absolutely heartbroken. 

“What I would say to the politicians who are maybe considering collapsing Stormont is we understand there are other important issues but we believe the best way to solve them is through Stormont in the democratic process so that it continues to operate and life-saving legislation has the best chance of getting through.

“We can’t wait any longer because it will take time for this Bill to come into effect, there would be a year’s awareness campaign and then it would take time to settle in.

“Imagine having to wait another couple of years to get to the stage that we are at now, it would be a travesty. 

“It would be heartbreaking.

“We have no control over it and we are just hoping for a positive response because organ donation and transplantation is the last resort. 

“It happens when all other avenues have been exhausted.

“Imagine the person you love most in the world had a better chance because of this going through, to us it is just a no-brainer.

“My son’s last chance is to get a new heart.”

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