Amendments formally laid before House of Commons in bid to bring about Daithi's Law via London

The amendment paper – which bears the names of DUP MPs as well as SDLP and Alliance ones – appeared on Parliament’s website on Friday.

It comes after an attempt to recall Stormont to deal with the matter failed, because of the DUP’s boycott of the Assembly in protest at the Protocol.

The amendment paper seeks to tack Daithi’s Law on to the existing, and largely unrelated, Northern Ireland (Executive Formation) Bill.

That bill was introduced with the aim of extending the deadline for a new Stormont election until 2024, but if the parliamentary authorities allow it to be amended, it could also serve to activate Daithi’s Law.

Daithi’s Law is the nickname for a new regime on how organ donation would work, named after six-year-old Belfast boy Daithi MacGabhann who has been waiting for a heart transplant since 2018.

Instead of the current system of getting people to opt-in as organ donors, the new regime would make almost everyone an automatic organ donor unless the opt-out.

This new regime was largely drawn up last year, when the Assembly passed a law called The Organ and Tissue Donation (Deemed Consent) Act (Northern Ireland) 2022.

But some technicalities still needed to be signed off by MLAs before the act actually came into force, and the DUP walked out of Stormont before these could happen.

With the DUP refusing to revive Stormont to deal with these final touches (something which would have meant the Assembly would keep on meeting afterwards, rather than being a 'one-off') local parties – and Daithi’s family – have said the onus is now on the Tory government to act in Westminster.

Earlier this week ex-health minister Robin Swann said Westminster had already shown itself ready to "act at pace on many other pieces of legislation" (like liberalising abortion law and permitting gay marriage), so something as uncontroversial as Daithi's Law should be no "stumbling block".

The amendment to the bill gives its stated aim as follows: “This new clause is intended to bring into operation during the current post-election period the Organ and Tissue Donation (Deemed Consent) Act (Northern Ireland) 2022, which received Royal Assent on 30 March 2022, by temporarily allowing Parliament (instead of the Assembly) to approve relevant regulations made by the Department of Health in Northern Ireland.”

It bears the names of all eight DUP MPs, plus Colum Eastwood, Claire Hanna, and Stephen Farry.

One aspect of Daithi’s Law is that, in spite of its name, it is unlikely to bring any immediate relief to little Daithi himself.

That is because the new opt-out system of organ donation only applies to adults (meaning those aged 18-plus).

Children’s organs can be donated under the new regime, but this would still require parental consent.

And a spokeswoman for the Blood and Transplant wing of the NHS told the News Letter adult hearts cannot really be used for children.

“With heart donation/transplant, the size is important,” she said.

"Adults and children can donate to each other, but a small child will need a small heart – a small child’s heart – as it needs to fit in their chest.”

And a source in the charity sector likewise said that “often children are too small to accept adult or a teen heart”.

All of which means that, even once the law is active, it could still be a waiting game for Daithi and his parents before a matching heart can be found.