The family of a six-year-old Belfast boy, Daithi MacGabhann, awaiting a new heart has been promised a meeting with Northern Ireland Secretary Chris Heaton-Harris in a bid to speed up the law which will give him a transplant.

The move for a meeting, expected within a few days, came after all five political parties wrote to Northern Ireland Secretary Chris Heaton-Harris last week urging him to intervene and introduce legislation for a new opt-out organ donation system at Westminster for Northern Ireland.

Six-year-old Daithi MacGabhann has been on a waiting list for a new heart since he was four days old when he underwent major open-heart surgery.  Almost a year ago the Stormont Assembly voted to introduce the opt-out legislation to give Daithi and 130 other patients on the organ donor register in Northern Ireland the opportunity to benefit from life-saving transplants.

The measure, automatically making people organ donors when they die unless they specifically state that they do not want to be, was titled Daithi’s Law in honor of the young boy and his family who led the opt-out campaign.

Then Stormont and its power-sharing executive collapsed when the Democratic Unionist Party (DUP) refused to participate unless a special Northern Ireland Protocol linked to Brexit was abandoned.

Consequently, additional secondary legislation needed to start operating the scheme this spring never happened.

Although Heaton-Harris has the power to intervene and introduce legislation at Westminster, he said last week it was up to the local parties to get back into the power-sharing Executive to enable them to make decisions like this themselves.

That prompted the leaders of the five main parties, including the Democratic Unionist Party (DUP), to take the highly unusual step of sending a joint letter to him urging him to intervene.

The letter stated, "It has become clear that further legislation is needed for the opt-out system to become fully operational.”

.@PaulClark_UTV questioning @chhcalling from USA’s Capitol Building about #DáithísLaw & next week’s meeting with the SoS.

Incredible to see Dáithí’s Law being discussed like this, but just shows how significant and important the issue is. @Tracey_utv | @UTVNews#Time4Action

— Donate4Dáithí (@Donate4Daithi) January 26, 2023

Ferghal McKinney, head of the British Heart Foundation Northern Ireland, said, “There was euphoria when this law was approved last year and that wasn’t just true for Daithi and his family, it was also true for the wider public who supported the move. 

 “The 130 people that are currently on the organ donation register in Northern Ireland need this legislation enacted too and sadly over 10 may die waiting on that list.”

The DUP agreed to join the other parties in the letter to Heaton-Harris after Sinn Fein Vice President Michelle O’Neill said, “News that the organ donation law is now being held up because one party has refused to enter the Assembly and Executive is completely unacceptable.”

The Belfast Telegraph reported that it was seen as an exceptional step by the DUP to join the other parties to sign the letter, given the party’s continued boycott of the Assembly over the Northern Ireland Protocol.

A Northern Ireland Office spokesperson told the paper, “The secretary of state is aware of how important this life-saving legislation is to Daithi, his family and people across Northern Ireland, and will meet the family on this important issue.”