THE family of Ballymurphy organ donation campaign champion Dáithí Mac Gabhann have said that they never gave up hope of finally seeing Dáithi's Law pass.

The life-saving organ donation legislation was passed at Westminster last week. It will now become law on June 1.

Dáithí’s Law, named after six-year-old Dáithí Mac Gabhann, will introduce a soft opt-out system whereby people will automatically become organ donors unless they state otherwise. The legislation was delayed this spring due to the DUP’s boycott at Stormont. 

Dáithí has been on the heart transplant waiting list since 2018 and his family had tirelessly campaigned for the legislation on organ donation to be changed to help increase the number of donors.

Looking back over the years of campaigning – which culminated in the passing of Dáithí's Law – dad Máirtín said the family never gave up, even when times were tough.

“We were told we couldn’t and shouldn’t and wouldn’t, but we did. We did it and we achieved something that was looked at as borderline impossible,” said Máirtín.

“As I said last year, we felt like we moved mountains to get to this part and we would move those mountains again. This was even harder again to get through.”

The MacGabhann family after Dáithí's Law was delivered
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The MacGabhann family after Dáithí's Law was delivered

Dáithí, who is waiting on the gift of a new heart was born with Hypoplastic Left Heart Syndrome. His family set up the Donate4Dáithí campaign and have been raising awareness about organ donation ever since.

“When we were away in London, before we went to Westminster, we called in to Evelina Hospital and that is where Dáithí had his first open heart surgery at four-days-old. 

“He was placed on a life-support machine called ECMO and he spent six days on that machine and had more open-heart surgery again at ten-days-old.”

“St Thomas’ Hospital is at one side and Westminster is at the other side. Evalina is the children’s part of St Thomas's. They’re looking at each other. It’s kind of fitting that six years before Dáithí’s life had been saved in Evalina time and time again – and then six years down the line he was having his own life-saving law passed in the House of Commons just across the river.”

Máirtín spoke about the incredible moment Dáithí visited Evalina Hospital and the consultants and nurses who looked after him got to see him again.

“As he was on that life-saving ECMO machine, not a lot of people come off that machine so he was a wee bit of celebrity in that hospital.

“The nurses and consultants who were looking after him six years ago all came running out to see him and remembered him and remembered all the stories. It was just incredible. It was amazing that we were able to do that the day before his life-saving law was passed then in Westminster. 

“It was a nice touch. We were in the place where his life was saved and then we were passing his life-saving law that will hopefully help save his life one day.”

Throughout the entire journey Máirtín and his family expressed “we are not giving up – we will fight this to the end".

“The fact is we never gave up hope at all and we did fight it until the end. To get that phone call from Chris-Heaton-Harris on a Sunday night was amazing."

Máirtín said the phone call from the Secretary of State was the “best phone call I’ve ever had where the campaign is concerned".

“It’s just absolutely incredible, the Secretary of State ringing you to say that he is passing this because he was so moved by ourselves and Dáithí and our determination and our fight. It’s just been mind-blowing. To get that call after all those weeks of uncertainty and let-downs. I couldn’t believe it.

“I never did give up hope. I was almost broken a few times, but we kept fighting and we put everything on the back-burner for the last six weeks.”

Ballymurphy community celebrate Dáithí's Law passing in the House of Commons
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Ballymurphy community celebrate Dáithí's Law passing in the House of Commons

Máirtín said Dáithí is very aware of the importance and meaning of Dáithí’s Law and when he found out Dáithí’s Law was going through “he started jumping around his room".

When Dáithí initally heard that the law would be delayed this spring he was "so disappointed," Máirtín said.

"He was there on the steps of Stormont last year and was so elated and when we broke the news to him initially he was devastated, he was so angry. 

“He is very aware of Dáithí’s Law and that organ donation saves lives and he’s very aware that he has a special heart and that he’s different from other people. 

“The next morning, when I shouted up to Seph that Chris Heaton Harris had put out a statement he jumped out of bed and asked 'does that mean Dáithí’s Law is going through' and when I said that it did, he started jumping about his room. He understands the victory.

“He understands everything that we have put into it, why we’re so busy and why we’re always doing something.”

Máirtín said while “we can’t protect Dáithí from his condition, we do everything we can to try and increase his chances in other ways".

"It comes from a place of being helpless where Dáithí’s condition is concerned. It’s a parent’s job to protect their children and when that’s taken out of your hands, when you have that helplessness and as a parent it is so horrible. 

“To be able to do anything you can to help is definitely my way of trying to protect him in other ways and try to make up for the lack of protection that I can give him.”