A mum and son from Bicester with an extremely rare heart condition are on a mission to raise awareness about organ donation after both having life-saving heart transplants. 

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

Nearly all of her family members that were diagnosed have passed away, but due to organ donation Ms Sofroniou and her 10-year-old son, Jayden-Sean, are the only survivors.  

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

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

Jayden-Sean was diagnosed with the conditions at birth, and at age six he had an internal defibrillator implanted in his chest.

The doctors felt this was the time he needed to be placed on the transplant list as he was deteriorating quickly, and so he was placed on the transplant list for a new heart in November 2020.

After becoming more physically and emotionally ill, he struggled to keep up with his friends, he became breathless very easily and relied on a wheelchair. 

After three unsuccessful calls, Jayden-Sean's perfect match was found in December 2023 - and he had it the same day. 

Ms Sofroniou, aged 39, had her heart transplant at the age of 27 after being diagnosed at around the age of three. 

Now, the mum and son duo are on a mission to raise awareness for organ donation and to raise money for a mechanical heart for children at Great Ormand Street Hospital, where Jayden-Sean had his transplant. 

They are hosting a charity dog show on Sunday, September 8 at Spider Park on Keble Road in Bicester.

The show will offer a variety of awards such as 'best dog' and 'most handsome dog'.

It starts at noon and those wanting to register their dogs for the awards need to be there for 11am. 

All the money raised will go to Great Ormond Street Hospital to help fund a mechanical heart.

She said: "I was given days to live, I had five calls when I had my transplant in a space of three weeks.

"If I didn’t have my transplant, if it wasn’t for my donor, I wouldn’t have Jayden, I wouldn’t have been able to be a mum to my eldest daughter.

"Its massively changed my life.

"Jayden was around three when he started getting symptoms, and I would say from about five he’s been in and out of hospital all his life.

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"He struggled to walk, stay awake in the day, he needed naps, he couldn’t get up the stairs and he had a wheelchair in the end."

As well as the dog show, the pair are also hoping to host a charity football match before December, as Jayden-Sean’s wish was to play football after his transplant.

Ms Sofroniou said since his transplant, Jayden-Sean is "recovering well" and is now able to play football with his peers. 

Speaking on the dog show next month, Ms Sofroniou said Jayden-Sean feels "quite proud" and "happy that he can give something back".