The brave parents of five children waiting for heart transplants launched a campaign to raise awareness of organ donation today.
The youngsters are aged 10 months to eight years old and are all being treated at the Freeman Hospital in Newcastle upon Tyne - where Mirror campaigner Max Johnson received his heart.
Collectively, they have been waiting for years for the gift of life, and came together to urge parents across the UK to talk about donation.
They include the parents of a little girl whose story was highlighted on the Mirror's front page earlier this year.
Terry and Cheryl Archbold suffered the agony of 18-month-old Beatrix's cardiac arrest after losing their newborn baby daughter Isabel (c) four years ago.
They were asked if they were prepared to donate Isabel's heart after she died of a rare cardiac condition.
The other children waiting for organs in Newcastle are one-year-old Luke Myles, three-year-old Ethan Mains, Nour Hussein, eight, and Leyla Bell, who is just 10 months old.
They are all on ward 23 at the Freeman, where they are all on the urgent waiting list for a donor heart.
Terry and Cheryl have seen both sides of the transplant journey as parents.
They donated the heart of Isobel for medical research after her stillbirth in 2018.
In May, they endured the nightmare of Beatrix's diagnosis with an enlarged heart.
She has a Berlin Heart Ventricular Assist Device (VAD) as she awaits a heart transplant at the Freeman - with the other families who are waiting for donors.
Terry, 44, praised the Mirror Change Law for Life campaign led by Max, 14, of Winsford, Cheshire, and the family of his donor, Keira Ball, who tragically lost her life in a car accident near her home in Barnstaple Devon, in 2017.
Terry, of Burnopfield, Co Durham, said: "The particularly difficult thing is when you talk about donating to children. We lost Isabel in 2018.
"We did agree to donate her heart to research. She had very complex and rare issues, different to Beatrix, and it gave us comfort to help others in the research.
"As a parent, nobody contemplates something terrible happening, and the prospect of losing a child."
He added: "Being asked to consider donating Isabel’s heart was incredibly difficult, especially at such an indescribably upsetting moment as losing a child.
"There was so much emotion, but we made the decision to donate her heart to aid research so that parents wouldn’t have to go through what we did.
"We now find ourselves on the other side, with our daughter needing a donor heart to have any chance of surviving.
"Currently there are around 204 kids across various hospitals in the UK waiting for an organ transplant."
There are currently around 48 UK children in need of a heart. NHS research suggests that parents asked about organ donation are less likely to donate a child’s organs with 55% of families supporting organ donation for a relative under-18 in 2020/21.
“Organ donation is such an abstract thing you never really think about it until you need to. I hope we can bring a little bit of human connection,” said Stuart, dad to Ethan.
“It is a horrific situation, and I wouldn’t wish it on anybody, all we can ask is that anyone who finds themselves faced with this decision gives it consideration.”
Savana, mum to 10-month-old Leyla who is currently in paediatric intensive care, has been registered as a potential organ donor since she was 16.
She is all too aware that in order for her daughter to get a heart, another child's life is tragically cut short.
She said: "I can understand why some people say no as they are being asked to donate an organ at the worst time in their lives.
“I’d just hope they’d take solace in the fact that their child lives on in someone else. All we are asking is for people to have that conversation.
"If you asked 1,000 people, would they accept an organ if they needed it, they would because they want to live.
"That’s all we want to do, I want to give my daughter that chance too,” Cillian and Lesha are parents to Luke, who has just celebrated his first birthday on the ward.
They have experienced an almost year-long wait for a donor, and the wait goes on.
They now know what it is like when a loved one so desperately needs them. “We all need to remind ourselves every day how incredibly lucky we are to be alive and healthy,” said Cillian.
“We know that every single parent in our situation would make the decision to be an organ donor and would donate their child’s organs in that most awful and unthinkable situation.”
The Freeman is one of only two specialist centres in the UK that carry out heart and lung transplants for children, with families from
across the UK, including Galway, Glasgow, and Manchester.
Terry added: "The reality is, without parents considering the unthinkable or choosing to donate in the midst of their own tragedy without that, none of these children would have a chance at life.
"If you want to be an organ donor after you die, it's really important that you talk to your loved ones and make sure they understand and support your organ donation decision."
- For details visit NHS Organ Donor Register, www.organdonation.nhs.uk/.
