A couple whose son died waiting for a life-saving heart transplant which never came, have said they talk about him every day.

Shelley and Lee Wealleans agreed to let Carlisle toddler Mackenzie be the face of The Cumberland News’ Promise Life campaign four years ago, highlighting the desperate need for organ donors.

Little Mackenzie died just days before his second birthday, having spent 60 days at the top of the international transplant waiting list.

While the couple have gone on to have two more children – Madison and Jaxson – in addition to Shelley’s son Corey, they spend each day talking about Mackenzie and the issue of organ donation.

The Wealleans have now given their backing to a new campaign launched to encourage people to tell their families about their decision to be an organ donor when they die.

The #DonationConversation highlights a recent survey by NHS Blood and Transplant survey, which reveals eight out of 10 people support organ donation, but half of adults in England never talk to anyone about their wishes.

In the last five years, over 500 families have said no to donation despite their relative being on the NHS organ donor register.

The issue has always had even more poignancy for Shelley, 31, who herself refused to donate the organs of her first child, Lewis West Rawlins, who died of a heart condition when he was three months.

It was a decision she regretted even before her third son, Mackenzie, became ill, but believes it was her lack of knowledge and the timing of the conversation which prompted that original decision.

Shelley thinks organ donation should be an opt-out rather than opt-in, arguing that the system at the moment is not working effectively.

Shelley and Lee, 34, who live on Borland Avenue, Botcherby, Carlisle, think more should be done to educate people about what organ donation is and encouraged people to talk about what they would want to do with their friends and family.

Shelley said the last thing you want to be asked when you’ve just been told your loved one is dying or dead is if they will donate their organs.

She said: “I think that’s what puts people off.

“I think it’s just the information that people are short of. It’s just understanding the process. It’s a commitment for afterwards, that you’re doing something for when you’ve gone and it’s a good thing to do.”

Shelley and Lee talk about Mackenzie and Lewis every day with their children Corey, 10, Madison, four, and Jaxson, (CORR) 13 months, who they say is the spitting image of Mackenzie but with dark hair.

Madison, who was put on the organ donation register within hours of her birth, draws pictures for Mackenzie, who would be six this year.

She says her older brother is in the sky with the angels.

Shelley said: “It’s something that’s close to our hearts and it’s something that’s going to affect our lives for the rest of our lives.

“It’s something that’s got to be in our lives, that’s got to be talked about so we’re aware of it.”

Andy Eddy, chair of Transplant Sport and also a liver transplant recipient, said: “The sad reality is that on average three people die in need of an organ transplant every day across the UK due to a shortage of people being willing to donate, and due to their families not giving consent.

“We hope that, alongside a number of charities, our #DonationConversation campaign will draw important attention to how organ donors transform lives and encourage people to make clear to their families whether they want to save lives, if they can, when they die.”

At the moment there are 747 people on the waiting list for organ donations in the north west. In 2015/16, 70 people died while waiting for an organ transplants.

Lee said friends and colleagues tell him they don’t know how he gets up in the morning after everything the family has been through.

“But I’m pleased with what I have got,” he said. “It’s my family and I love them just as much as I loved Mackenzie.”

Thousands of people have signed up to be donors since Promise Life launched. It aims to raise awareness of the issue of organ donation, to ensure people can make informed decisions.

Visit www.organdonation.nhs.uk