THE family of a Ballymurphy boy who is waiting on the gift of a new heart have said they are very “disappointed and angry” following a meeting with the Secretary of State to discuss delays implementing new organ donation laws in the North.
Six-year-old Dáithí Mac Gabhann is on the organ transplant waiting list. The MacGabhann family who set up the Donate4Dáithí campaign lobbied for new legislation which was set to come into effect this year. The new legislation would see the introduction of a soft-opt-out system whereby people will automatically become organ donors unless they state otherwise.
Known officially as Dáithí’s Law, it was due to come into force this spring but has been delayed due to the DUP's boycott of Stormont.
Dáithí’s parents Máirtín and Seph met with Secretary of State Chris Heaton-Harris at Hillsborough Castle on Wednesday afternoon.
Speaking after the meeting, Máirtín MacGabhann said the Secretary of State said “it would take too long” for the British Government to intervene and pass the law at Westminster.
“Dáithí’s Law deserves to have a go live date in spring as planned and after the meeting today it looks like we’re not getting that,” said Máirtín.
"He did speak to us not just as a politician, he spoke to us as a family man as well.
"He shared our frustrations with our politicians, but we already know that, we're already frustrated with our politicians, the whole place is frustrated with our politicians.
“Our point was that there is no assembly, and, without the assembly, this secondary legislation can't go through.
Six-year-old Dáithí and his mother Seph
Máirtín said that they were “bitterly disappointed” following Wednesday’s meeting.
“We told the Secretary of State that this is much bigger than Dáithí's Law – this is a beacon of hope for the organ donation and transplantation community here."
Last month, the leaders of the five largest political parties in the North wrote to the Secretary of State calling for the British government to legislate at Westminster to ensure the new system for organ donation can be operational as soon as possible.
The British Heart Foundation Northern Ireland has expressed disappointment at the lack of progress on implementation of the soft-opt out organ donation legislation.
Head of British Heart Foundation Northern Ireland, Fearghal McKinney, said: “We share the disappointment and frustration of the parents of Dáithí Mac Gabhann and all supporters of this life-saving legislation.
“The delay in the implementation of Dáithí’s Law is not just disappointing for the Mac Gabhann family, but for the entire organ donation and transplant community in Northern Ireland and indeed the wider public.
Máirtín Mac Gabhann speaking after the meeting
"The soft opt-out system provides a real opportunity to increase organ donation rates and the public are being denied that opportunity.
“The passing of this legislation in the assembly was quite rightly celebrated and brought hope to so many. We need to see the energy and positivity which led to that historic occasion continue until we see the full implementation of this law.
“Organ donation saves lives and during Heart Month this February it is more important than ever that people register to become organ donors and share their wishes with their families and loved ones so they can give the gift of life to others.”
Sinn Féin MLA Aisling Reilly said Dáithí’s Law should be implemented quickly to help save lives and transform the lives of people waiting on new organs.
“The positive Donate4Dáithí campaign has touched the lives of many, but importantly, it has helped to modernise our organ donation laws," said the West Belfast MLA.
“Dáithí’s Law will save lives and transform the future for people who are desperately waiting on a new organ.
“It’s unacceptable that this law has not been fully implemented and is now being held up by one party’s refusal to form an Executive.
“I am disappointed that the British Secretary of State has not committed to legislating to make this law fully operational so that people waiting on a transplant can benefit from it.
“Sinn Féin will not give up on forming an Executive that will immediately work together to implement Dáithí’s life-saving law and get it over the line.”
