Robert Poysor was a normal healthy 15-year-old with a passion for sports and dreamed of growing up to be the next big computer expert.  But Robert's young life was tragically cut short when he unexpectedly collapsed and died suddenly. His mum, Diane Tolley, has spoken of her battle to overcome her loss and her plight to make sure no other youngsters die from what has become known as sudden death syndrome.

It was a sunny day in May 1996 and Robert Poysor knew the best way to make the most of the day – a good bike ride with his friends.

His mum, Diane Tolley happily waved him off on his journey – little did she know it would be the last time she would see her son alive.

For Diane and her devastated family, Robert’s tragic death at the age of 15 came as a huge shock.

Robert had appeared to be the picture of health, was rarely ill and was extremely active – enjoying playing football, hockey, and cricket for his local teams.

His family were told their son had died if Sudden Death Syndrome – an umbrella term used for the many different causes of heart attacks in young people which can sometimes cause sudden death.

A post mortem revealed that Robert had died from a genetic heart defect known as hypertrophic cardiomyopathy (HCM) – a thickening of the heart wall muscle, which stops the heart beating properly.

“We were absolutely devastated by his death, so shocked,” said Diane of  Bewdley.

“He was such a fun-loving teenager who liked to get involved with all sots of sporting activities and had a lot of nice friends.  He was very popular.”

She said almost 8 years have passed since Robert’s death but the family still struggles to come to terms with their tragedy.

Robert’s dad Ian Poysor, 56, sister Angela Moody, 29, step-dad Tom Tolley, 58 and step-siblings, Emma, 30, and Bob, 28, will always have a hole in their lives, she added.

“It has been extremely difficult to cope.  Christmases have never been the same since – it’s so hard when someone you love is missing,” said Diane.

“To lose your parents when they have reached old age, you expect it to happen but to lose a child just seem to make no sense. 

“I think you have to go through it to understand the excruciating pain.

“When I see Robert’s friends, all grown up, it’s extremely difficult.

“They are men and women now, but Robert will always in a child in my mind.

“I try not to imagine what he would look like now if he had survived – it’s far too painful.”

Diane’s family is not alone with its grief – sudden death syndrome is more common than many may think.

It is estimated between four and eight young people die suddenly each week in the UK of cardiac abnormalities.

There are 11 major causes of unexpected cardiac death in the young – the most common is that suffered by Robert.

About 10,000 British people are known to have HCM but many more are believed to have the potentially life threatening condition without realising it.

This was the case for Robert, who was never diagnosed with a heart condition and his mum has still not been able to trace anyone in the family with the defect.

Now Diane is backing a campaign being run by the charity Cardiac Risk in the Young (CRY).

Diane got involved with CRY after being contacted by another family that had also suffered the sudden loss of a child.

She has never looked back and found the charity’s help a huge support, and she herself now writes to several Midlands families who have children who died in similar circumstances to Robert.

The charity is working with Stockton South MP Dari Taylor, treasurer of CRY’s All Party Parliamentary Group, to draft a new Bill, set to have its second reading in the House of Commons on Friday, March 12.

The draft Cardiac Risk in the Young (Screening) Bill aims to significantly improve the availability of screening to those currently recognised as being at “high risk” of sudden death syndrome – those who have a family history of heart defects.

A simple way to “screen” or diagnose cardiac abnormalities is by having an electrocardiogram (ECG) but as the law stands it is not mandatory for “high risk” children to have one.

CRY is urging county residents to write to their MPs in a bid to push the Bill through and ensure it becomes law.

Diane has written to Dr Richard Taylor, MP for the Wyre Forest, who has written back to her supporting the campaign.

She said: “it’s great that he has shown positive support and it’s a small step towards achieving our goal.

“Young lives are being lost each year due to misdiagnosis and lack of screening for young people at risk.

“The help of the local community is vital in the battle to get this issue taken seriously and I urge you to write to your local MP to express your support.