Bicester mother and son with rare genetic heart condition say transplants saved both their lives

  • ITV News Meridian's Wesley Smith has been speaking to a mother and son about what organ transplants have meant for them.

A mother and son say they owe their lives to organ donors after they both were saved by a heart transplant.Caroline Sofroniou, from Bicester, has a very rare genetic heart condition, which she lost her mum to when she was three.

Her 10-year-old son, also has the condition, but the two of them have survived following transplants.

However, donor numbers are down, despite the fact that in the UK, those over 18 people are automatically considered for organ donation when they die.

The gap is thought to partly be down to cases involving children, as consent for organ donation still needs to be given by families.

Ms Sofroniou is now organising a charity football match in Bicester, and a dog show, to raise funds and awareness of how heart donation and truly transform lives.

  • Jayden was asked what the best bit about life is now he's had the transplant.

Generations of Caroline's family inherited the rare genetic heart conditions, Hypertrophic Cardiomyopathy alongside Danon’s disease.

Caroline Sofroniou said: "The heart muscle gets thick and as it gets thicker, it’s really difficult to walk, or even hold a conversation.

"For myself it was scary, but with Jayden having his transplant, it was above how scary it was for me, but we knew he’d come through, we knew how much of a warrior he was."

Her son Jayden had three false alarms before he finally found the right match for the transplant that has changed his life.

When Jayden was asked what the best bit is about his life now he's had the transplant, he said, "living... and horse riding."

He is proud of his transplant scars and of the fact he can now do so much, especially play football, as an Oxford and Manchester City fan. Credit: ITV News Meridian

In the UK, more than 7,000 are still waiting for a transplant, 91 people are on the list in Oxfordshire, in Berkshire it is 108, and in Hampshire it is 202.

Lucy Dames, Organ donation nurse said: "There’s a real gap between organ donors and the number of people that need a transplant.

"That’s because sometimes families don’t feel like they can support organ donation at the point they’re asked to support it.

"If you know that you want to be an organ donor, in the event of your death, the most important thing is to tell your loved ones that that’s what you want to happen."

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