Organ donation: 'Sick children can't stop deterioration because of no Northern Ireland Assembly'

The parents of a 4-year-old boy who died while waiting for a new heart have said his story might have been different if an opt-out system was already in place in Northern Ireland.

Ollie Grant passed away on 13 January after suffering a stroke following major heart surgery.

He was on the urgent organ donation list but died before ever receiving a call.

On the day before his funeral, his parents Riona and Damien spoke to UTV about his life and the others he touched in his four short years.

"The amount of families who have told us that he has been an absolute inspiration and that he has changed, in the short time that he has been with them, he has changed their life forever and their perspective in life ... that is a big thing for me in the last few months especially," said Damien.

Ollie was born with hypoplastic left-heart syndrome, which means the left side of his heart wasn't working.

He underwent two major heart surgeries and suffered a stroke at just 12 weeks old.

He was left blind and deaf and was diagnosed with epilepsy and cerebral palsy.

But their miracle boy defied the odds and expectations of doctors, and slowly he began to regain his strength.

However after his third heart surgery in December 2022, he suffered a fatal stroke.

Riona and Damien are frustrated that the opt-out organ donation system is still not in place in Northern Ireland.

"If it had been in place, things might be different. You know, we don't know the answer to that, and we'll never know. But the longer that this takes to put in motion and the longer these kids wait... the more we lose," said Riona.

Damien added: "They can't make a difference in their life. They (children on the organ donation list) can't pause their deterioration just because they (MLAs) don't want to sit in the Assembly.

"The sick children are still dying every day because of this. Because people can't get together and make decisions."

The opt-out legislation is named after 6-year-old Dáithí Mac Gabhann from west Belfast.

Dáithí's Law was passed last year by the Assembly but cannot come into effect in Spring as planned without a functioning Executive.

Pressure has fallen on the Secretary of State to push through the final stage of the law to ensure it comes into place.

The Mac Gabhann family have said Chris Heaton-Harris has agreed to meet with them on 1 February to discuss the delay.

They want to see Westminster pass the secondary legislation.

In the meantime, the Grant family prepare themselves for a painful goodbye on Tuesday and say they are determined to ensure Ollie's legacy lives on.

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