The torment that six-year-old Dáithí MacGabhann and his family are going through is incredibly uncomfortable to see.
We are used to them being so full of hope and positivity. They have already achieved so much, helping to unite Stormont parties in support of new laws in a bid to boost organ donation.
But one year on, with the collapse of devolution stalling indefinitely the implementation of the life-saving legislation, they look deflated.
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Dáithí's father Máirtin MacGabhann said he felt "so angry" after they and mother Seph Ni Mheallain met this week with the Northern Ireland secretary.
He said Chris Heaton-Harris told the West Belfast family it would take too long for the UK government to intervene and pass the opt-out organ donation law at Westminster.
"I'm tired, dejected," Mr MacGabhann told BBC's Evening Extra in an interview some hours after the meeting at Hillsborough Castle.
"To be honest, I've been struggling to lift my head. We went for some lunch after, and I couldn't even eat properly. I went home and just lay in a dark room."
He told how his son, who is waiting for a heart transplant, was "so full of energy" a year ago when the bill known as Dáithí's Law was passed by MLAs.
But on Wednesday in Royal Hillsborough they were "pushing him in a wheelchair with an oxygen tank connected to it".
"Dáithí is on the decline. We're hoping that's a slow decline. But time is not on our side," Mr MacGabhann said.
"And what I said to the Secretary of State, I said, 'If anybody deserves to see this life, it's Dáithí.'
"We don't know what the future holds for Dáithí. It's very uncertain. And we know first-hand that with heart conditions like Dáithí's, it can change very quickly.
"I said to the Secretary State as well that we attended a young boy's funeral last week in Kilcoo who was four years old with the same condition as Dáithí.
"Just in October there, I held that boy in my arms. He was so full of life. And he's now gone. And that is how quickly heart conditions like Dáithí's can change."
The delay to this legislation is a consequence of the DUP's boycott of Stormont over Brexit's Northern Ireland Protocol. However, in sending a joint letter to Mr Heaton-Harris urging him to intervene, Stormont parties have sought to place this issue above normal politics.
Nothing is stopping him stepping in. It would only be latest in a growing list of areas where the UK government has acted on issues in Northern Ireland, from same-sex marriage and abortion reform to Irish language protections and cutting MLA pay.
Despite their disappointment, the strength and determination of Dáithí's family has shone through and they are now considering legal action. The newly announced Omagh bomb inquiry unfortunately demonstrates how in many cases, the UK government will only act when challenged through the courts.
But it didn't have to be this way. On the issue of organ donation, politicians here have sat on their hands for far too long.
More than a decade has passed since GAA pundit Joe Brolly donated a kidney to fellow Belfast club member Shane Finnegan, thrusting the debate into the public eye.
Former UUP MLA Jo-Anne Dobson in 2015 launched a Private Member's Bill on an opt-out system but it was scuppered by MLAs on the Assembly's health committee.
Ms Dobson, who donated a kidney to her son Mark, at the time claimed the DUP and Sinn Fein had "joined forces to kill the bill".
Opt-out systems have been in place in Wales since 2015, England since 2020 and Scotland since 2021, while in the Irish Republic a proposed bill was launched last November.
Years of Stormont indecision and instability have brought us to this juncture, leaving Northern Ireland lagging behind once again.
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