'Jordan really lived life': Mum on young son's death from heart disease

Jordan Simon, of March, was 25 when he died from heart disease in November 2021.

He had lived with dilated cardiomyopathy for nine years after being diagnosed at the age of 16.

It meant that the part of Jordan's heart muscle was so thin that its ability to pump blood was reduced.

Jordan's mum Sarah Tustin has spoken to BBC Look East to urge parents to trust their instincts and ask doctors for a second opinion if they think their child has a serious illness.

Sarah said: "He was getting tired out and out of breath.

"He started to lose weight, became more tired and his back ached.

"He started to collapse and he laid on his bed and said - 'Please God let me die'.

"And at that point, as mum, I had to do something. I had to push."

Sarah took Jordan to hospital multiple times, and he eventually received the diagnosis.

She said Jordan's condition was hours away from becoming fatal, but that staff at Great Ormond Street Hospital in London eventually secured a heart transplant for him.

He went on to "really live" for nine years, working as a holiday park entertainer.

But Sarah believes she would have faced a different outcome if she had not insisted that doctors look for a second opinion on Jordan's condition.

"If there are parents out there who have got teenagers that are having the same symptoms - breathless, lethargic - do not accept the first diagnosis from the hospital or doctors," she said.

"If you're still worried, go back. If we hadn't have done that, Jordan wouldn't have had nine more years."

Becoming a holiday park entertainer was Jordan's dream.

Sarah said: "He was dancing on stage. He was jumping about.

"He managed to do all the dances.

"It was his family that was scared. He was amazing, he just really took it in his stride."

Jordan was rushed to Royal Papworth Hospital, Cambridge, in the build-up to Christmas in 2020 after an issue with his heart and kidneys.

On December 30, the hospital allowed his girlfriend Beth Dodge to visit him due to an "exceptional circumstance".

Jordan proposed to Beth in front of nurses, doctors and his family who watched a live stream online.

Jordan's brother Jack said at the time: "Unlike most people, being in intensive care wasn’t going to stop him.

"Beth and mum visited Papworth with us all watching on FaceTime.

"After a few minutes, Jordan was down on one knee.

"It’s been emotional for us all, but we all stayed strong and Jordan has proved yet again how strong he is.

“I am truly honoured to be your brother, and your best man!"

Beth said 'yes'.

Nine years after his diagnosis, Jordan died in November.

His mum told BBC Look East that he had had enjoyed the last nine years of his life thanks to his heart donor and the Great Ormond Street Hospital staff.

Sarah said: "I have to carry on and have adventures for him.

"I have to do it for him because I know he'd want me to."

The British Heart Foundation estimates that 7.6 million people are living with heart and circulatory diseases in the UK.

A BHF statement reads: "We estimate that in the UK, more than half of us will get a heart of circulatory condition in our lifetime.

"Heart and circulatory diseases cause around a quarter of all deaths in the UK.

"That's more than 160,000 deaths each year, or 460 each day - that's one every three minutes.

"Since the BHF was established (in 1961), the annual number of deaths from heart and circulatory diseases in the UK has fallen by around a half."

The statement also notes that at least 12 people under the age of 35 died from an undiagnosed heart condition every week.

The charity has support for people who are being diagnosed, or are already living with, a heart condition.

It has a support page online (https://www.bhf.org.uk/informationsupport/support) and a free Heart Helpline for medical enquiries: 0300 330 3311.

More information about the condition which Jordan had - dilated cardiomyopathy - is on the NHS website: https://www.nhs.uk/conditions/cardiomyopathy/