Sunderland mum: Why it's vital to get talks about organ donations into Wearside primary schools
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Cheryl Archbold, from Roker, and husband Terry are involved in a campaign to spread awareness of the sensitive topic.
Their little girl Beatrix, who is approaching her second birthday, spends every day attached to tubes while she waits for a heart transplant at the Freeman Hospital, in Newcastle.
Their call for action comes at a time when statistics show 889 people in the North East are waiting for a transplant and 67 of them need a new heart.
Nationally, 228 children need a transplant and 43 of them are waiting for a heart.
But the UK levels of donations are too low and that’s because more awareness is needed, especially of consent for a child’s organs to be donated, said Terry.
"It’s a bit of a myth that your organs are automatically taken. Next of kin have to provide consent and consent levels, as it stands for children under 18, shows half of parents decline.”
Terry and Cheryl’s heartbreaking choice
It is an issue that is very personal to the couple. Their daughter Isabel was stillborn four years ago. Terry and Cheryl agreed her heart could be donated for medical research.
Terry said: "From our own life experience, we know that a prior seed of thought helps. Cheryl immediately said yes. When I was asked the question, I first said no because we had never thought about it. We are proof of that prior seed of thought.
"If we can set that thought early in children, they will carry it forward for the rest of their lives.”
Terry added: “Organ donation has been put on the curriculum for secondary schools and the Department of Education is monitoring how that is going.
"The feedback we have got from teachers is that it is being dealt with more in a biological sense than an emotional one.
"If we are ever faced with that choice of whether or not to consent, it is an emotional response to that question.”
The couple are working alongside a charity which delivers organ donation education and Terry added: “We want it in primary schools as well.
"We are writing to schools and offering to come out to talk to children about organ donation.”
Ninety letters have gone out to North East schools and Terry hopes that will be extended soon to Sunderland.
Little girl with a poorly heart
She had an operation to fit a line into her body so she could receive medication but she had a cardiac arrest and was saved by expert surgeons at the Freeman who performed open heart surgery.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHS Blood and Transplant, said: "Signing up to be an organ donor is quick and easy and makes it easier for families if they know what you want.
“Give hope to the thousands of people and hundreds of children on the transplant waiting list.”
Join the NHS Organ Donor Register at www.organdonation.nhs.uk.