Prime Minister Rishi Sunak has been asked to help in the urgent implementation of Daithi’s Law to reform organ donation legislation for Northern Ireland.
Wednesday marks one year since the Stormont Assembly passed the opt-out donation system.
However secondary legislation is required to implement it, which cannot be approved at Stormont due to the political stalemate.
The law was inspired by six-year-old Daithi MacGabhann, who has been on the heart transplant waiting list since 2018.
Daithi’s father, Mairtin MacGabhann, said they are bitterly disappointed by the delay to the legislation.
“This day last year, we celebrated the day when politics worked. A year later and we are bitterly disappointed that Daithi’s Law will possibly be delayed due to politics not working,” he said.
“We are doing everything possible to fight the delay of Daithi’s Law and are hopeful that the Secretary of State and our MPs in Westminster can still get it over the line in time for spring 2023.”
Mr MacGabhann said his son’s health has been slowly been declining, describing a worrying time for his family.
“Daithi still remains stable, but we are on our way to Newcastle today for Daithi to undergo a cardiac procedure to give us more answers,” he said.
“It is a very worrying time for our family, but we are hopeful to be home by the weekend, where Daithi can continue his journey on the waiting list for the gift of life.”
He said the charity’s UK chief executive, Dr Charmaine Griffiths, has written to Prime Minister Rishi Sunak asking his government do all it can to get this across the line and implemented in spring 2023 as planned.
“Twelve months ago, the MacGabhann family, the Donate4Daithi campaign, the organ donation and transplant community and the wider public celebrated this important legislation passing the final consideration stage at the Assembly,” he said.
“It was a great moment and a triumph for Mairtin, Seph and of course, Daithi. It came after a long period of tireless and inspirational campaigning by so many.
“We didn’t think then that one year one we would once again be campaigning for this vital legislation to be implemented. Once again, there is widespread support for Daithi’s Law to be implemented and a real desire to get this across the line.
“We in the BHF are fully behind the campaign to see this legislation in place in Northern Ireland as soon as possible.”
Northern Ireland Secretary Chris Heaton-Harris said: “We all hope to see this law implemented by the spring as planned and I share their frustration that the political impasse in Northern Ireland is causing unnecessary delays to life-saving legislation.
“The quickest and simplest way to resolve the issue is if the Northern Ireland parties urgently get back to the Executive and govern in the interests of the people of Northern Ireland.”