Oxfordshire mother and her 10 year old son raise awareness of organ donations

Caroline Sofroniou, and her 10-year-old son have both received life-saving transplants

Caroline (right) and her son Jayden-Sean (left)
Author: Callum McIntyrePublished 30th Sep 2024

A mother from Bicester who had a heart transplant, as well as her 10 year-old boy, is wanting to raise awareness of organ donations.

Caroline Sofroniou has hypertrophic cardiomyopathy (HCM) alongside Danon Disease, an extremely rare heart condition that has been passed down throughout her family.

Ms Sofrioniou says that females with the condition don’t often survive after the age of 30, whilst in males it’s usually teenagers.

Caroline’s mum died to the condition aged 34, and her brother also died just 14 years old.

'I'm going to die'

Caroline’s son, Jayden-Sean was diagnosed with the conditions at birth, and was put on the waiting list for a heart transplant at the age of six.

He received his organ donation December last year, after waiting three years for a matching donor.

Jayden-Sean after receiving his heart transplant

Ms Sofroniou said: “Every time the call was, it’s not a good match, it was devastating.

“As he got older, he understood what was going on and said to me, ‘I’m not going to get a heart mum, I’m going to die’.”

Ms Sofroniou, 39, had her heart transplant at the age of 27 soon after her first-born.

She says, “I had my daughter at home and that was very very difficult, because I couldn’t care for her. I got to a point where I couldn’t even hold a conversation, I was too out of breath and couldn’t walk her to school.

“So, I had to stay in hospital until a heart became available.”

Caroline’s 19-year-old daughter, Kiera, has also inherited the conditions and has recently had an internal defibrillator implanted.

Caroline with her daughter Kiera

She is starting to get more symptom's daily, meaning she will also likely need a transplant in the near future.

Now, Ms Sofroniou wants to raise awareness of the importance of organ donations, she said:

“If there’s no awareness no-one actually knows what’s behind organ donation, because if there’s no organs available, people can’t continue their life.

“I wouldn’t be here today, my son wouldn’t be here today, and we wouldn’t be living our best lives.”

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