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Parents of Belfast boy needing new heart in plea over organ donor campaign

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Mum Seph Ni Mheallain with her son Daithi MacGabhann

Mum Seph Ni Mheallain with her son Daithi MacGabhann

Mum Seph Ni Mheallain with her son Daithi MacGabhann

A campaign to increase the number of lifesaving organ transplants in Northern Ireland has been hampered by the Covid-19 pandemic.

The parents of a three-year-old boy who needs a heart transplant have appealed to politicians to ensure the issue remains on the agenda, despite the challenges facing the health service.

They were speaking as the laws in England changed so that people now have to opt out of donating their organs for transplant, known as Max and Kiera's Law.

It was named after Keira Ball, who died aged nine in 2017, and Max Johnson, now aged 12, who was saved by her heart.

However, as is the case with soft opt-out system, the next of kin must give permission for their loved ones' organs to be used, meaning it is vital that people still discuss their wishes with their loved ones.

Northern Ireland is the only part of the UK and Ireland that has not introduced or moved to introduce soft opt-out legislation.

Daithi MacGabhann and his parents Mairtin and Seph have been shielding at their home in west Belfast since the middle of March. However, they are determined that their calls for a soft opt-out organ donation system to remain in the public eye.

Daithi was born with a congenital heart defect and had his first open heart surgery when he was just five days old.

He almost died as a result of the operation and is now on the waiting list for a new heart.

Mairtin (30) said: "This is just another bump in the road for us. We have overwhelming support from the public and the all the political parties, all 11 councils have pledged their support to our campaign.

"We were due to meet the Health Minister Robin Swann to discuss our campaign and he has seemed very supportive, but the meeting was due to take place in March, so it was cancelled because of the lockdown.

"It's really frustrating for us because Daithi still needs his transplant but the chances of that happening during the pandemic are almost non-existent.

"It's a massive worry for us, although sometimes you almost forget that Daithi is so sick because his condition is stable at the moment, meaning he is at home.

"The other night I had forgotten how sick he was and it just hit me like a ton of bricks. We got a lovely message from Kiera's mum the other day, saying it is worth it, that maybe one day we will get a Daithi's Law. We don't care what it's called, as long as the law is changed and more lives are saved."

Head of the British Heart Foundation (BHF) in Northern Ireland Fearghal McKinney said: "Although donation registrations have increased, thanks to the great work being done by families like Daithi's, there is sadly still a shortage of donors, especially for children.

"Last year nine people died because they didn't receive the vital donation they needed. We want everyone waiting on an organ transplant to be given the best chance possible at life, that is why we're urging politicians to make this a priority as we emerge from the current crisis."

Belfast Telegraph