A little boy has been on the heart transplant list for six years – one of the longest waits for any child in the UK.
The proud family of Daithi Mac Gabhann paid tribute to his indomitable spirit, after June 1 marked six years on the waiting list. He travels 200 miles from his home in Belfast to the Freeman Hospital in Newcastle for check-ups. The hospital is the only centre in the UK capable of carrying out a heart transplant for a child with his condition. Daithi was born in 2016 with hypoplastic left heart syndrome.
But he has also spent periods too poorly to receive a new heart. Dad Mairtin, 34, told the Mirror how Max Johnson, Keira Ball and our organ donor law crusade had inspired his son. He said: “We are waiting for the gift of a new heart. The Freeman is the only centre that can take him because of the risks involved. Daithi is a wee hero and he keeps me going. If I cannot face the day I get up and see his smile and know that he can do it. It has been a roller coaster but he has such hope and resilience.”
He told how they met Max and his family at recent British Heart Foundation awards. “Max is doing well and the story of Max and Keira gives us hope,” added Mairtin, a teacher. “They are our heroes, they have increased Daithi’s chances of getting a heart. The Mirror has done so much, we are truly grateful.”
Crusade
His son has driven a campaign which resulted in Daithi’s Law being introduced in his native Northern Ireland last year. Mairtin and his wife Seph, 28, who also have five-month-old twins Padraig and Declan and son Cairbre, two, worked hard to introduce opt-out organ donor legislation in Northern Ireland.
Inspired by our story on Max, then nine years old, whose life was saved by Keira, it came into force last year, three years after Max and Keira’s Law was introduced in England after our Change the Law for Life crusade. Keira was nine years old when she died after a car accident near her home in Barnstaple, Devon, in 2017, with her dad Joe making the selfless decision to donate her organs. Her heart was given to Max.
Max’s parents Emma and Paul, of Winsford, Cheshire, said: “We have watched Daithi and his family work so hard to bring about law change in Northern Ireland. Daithi’s Law is a testament to their relentless campaigning and the beautiful personality of a wonderful little boy.
“We were indescribably fortunate in 2017, when the Ball family felt strongly Keira would have wanted to donate her organs to save the lives of others. Max has enjoyed seven brilliant years, as a direct result of the Ball’s incredible gift. We hope, from the bottom of our hearts, Daithi is able to receive such a priceless gift. Please, have that conversation and share your organ donation wishes with loved ones.”
Daithi, who has met former Liverpool boss Jurgen Klopp, stars in an exhibition called The Call, which highlights his wait for surgery. Photographer Debbie Todd, 43, of Consett, Co Durham, has captured images of children for a £100,000 billboard campaign on the “gift of life” led by charity Red Sky Foundation.
After launching in Sunderland, the images were seen across big cities. Debbie said: “I hope the photos will encourage millions of people to discuss whether they would accept a donated organ to save their child. And, if so, would they give the gift of life to another child?”
Figures reveal that 8.6 million names have been added to the donor register since the Mirror began our campaign for the opt-out scheme. It is four years since Max and Keira’s Law came into force on May 20, 2020, and five years since it was passed by Parliament. When our campaign began in 2016, there were 22.5m names on the NHS Organ Donor Register. Now, the figure stands at 31.1m. Around 43% of the total UK population are on the organ donor register.
NHS Blood and Transplant said: “The message is clearly making its way into people’s minds. It was always predicted that, building on the law change in Wales in 2015, it would take up to five years to see the full effect of legislation in England. Opt-out legislation is not the sole answer to improving organ donation, it’s an important piece of the jigsaw.”
Both adult and child patients can wait years for a transplant. In 2018, Gareth Evans, 45, a dad-of-two from Stockport, Gtr Manchester, made a public appeal after more than nine years waiting for a new heart.
Hero
He had a heart transplant in 1990 for cardiomyopathy, when he was aged just 17, but it was failing.
"Having a new heart is like being a little boy and having Christmas every day,” he said at the time. “But having to tell the family you may not make it, is the most difficult thing to do. The final thing you can do is to be a hero, save people’s lives. There’s nothing more marvellous than that.” He got a new heart in October, 2018, but died days later. In 2023, there were 28 paediatric heart transplants in the UK. There are 40 children under 16 on the waiting list.
A NHSBT spokeswoman said: “We really hope Daithi receives a transplant soon, but there is a tragic shortage of donated organs, especially in children. We know it can be difficult to talk about organ donation and death, especially when it is about a child, but without organ donors there can be no transplants. We urge everyone to confirm your organ donation decision on the NHS Organ Donor Register, both for you and your children, and share your decision with your family.”
www.organdonation.nhs.uk or on the NHS App