Sudden death of son inspires mum to organise heart check clinics for 14-35 year olds

Marilyn Cullum who is doing a charity walk in London to highlight sudden adult death syndrome.Photo:

Marilyn Cullum who is doing a charity walk in London to highlight sudden adult death syndrome.Photo: Andy DarnellCopy: Stephen PullingerFor: EDPArchant © 2010 (01603) 772434 - Credit: Archant © 2010

Around 100 volunteers are set to be tested for hidden heart conditions thanks to one mother’s crusade to fund the kind of screening effort that might have saved her beloved son.

Supplied pic of Simon Cullum.

Supplied pic of Simon Cullum. - Credit: Archant © 2010

The shocking suddenness of Simon Cullum’s death aged 29, six years ago devastated his family but inspired his shattered mother Marilyn to set up a memorial fund to pay for the checks and follow-up procedures that could save someone else.

Having raised £12,000 bookings are being taken for people aged 14 to 35 to receive a swift and non-invasive electrocardiogram (ECG) at Cliff Park High School in Gorleston on June 14 and 15.

The simple test could save the lives of the 12 apparently fit and healthy young people who die each week in the UK from undiagnosed heart conditions, according to Cardiac Risk in the Young (CRY) the charity behind the screening.

Mrs Cullum, 59, of Green Lane, Bradwell, said: “Simon attended Cliff Park High School so I am very grateful that they have offered us their facilities for the screening, it means a lot.

“Simon was a healthy 29 year old who one minute was standing in the kitchen talking to me and 45 minutes later, I found him collapsed on his bedroom floor. Despite desperate attempts to restart Simon’s heart by his godfather, who happened to be there at the time, and the paramedics, Simon could not be saved.

“Pathologists recommended and supported by CRY, carried out tests on Simon’s heart at the Royal Brompton Hospital in London and it was there, we discovered the scale of the problem.

Most Read

“As you can imagine the whole family was devastated and I decided we had to do something to try and prevent others going through the same thing as we did. Fundraising for our local screening gave us something to focus on.”

She added: “I would like to say a big thank you to everyone who has helped raise this money, either by arranging events or donating - I couldn’t have done it without you and I must give a special thank you to my very good friend, Judy Burton, who has been on this journey with me every step of the way.

“If this screening can save just one person it will have been worth all the hard work that has gone into it.”

Dr Steven Cox, CRY’s director of screening said: “The death of a young person is heartbreaking and devastating for any family. It is therefore essential that anyone with a potentially fatal heart condition knows about it. Without this knowledge and, if necessary, appropriate treatment, they could be putting their lives at risk.

“In 80pc of cases there are no signs or symptoms, which is why cardiac screening is so important.”

If necessary a further echocardiogram (ultrasound scan of the heart) can be taken to provide further clarity.

Dr Cox added: “CRY now tests around 14,000 young people every year but we believe screening needs to be extended to all young people. Although screening will not identify all those at risk, in Italy, where screening is mandatory for all young people engaged in organised sport, the incidence of young sudden cardiac death has been reduced by 90pc.”

CRY’s screening programme is overseen by Professor Sanjay Sharma, Professor of Inherited Cardiovascular Disease and Sports Cardiology at St George’s Hospital London and the Medical Director of the Virgin London Marathon. He makes no charge for his supervision and due to this support, CRY is able to subsidise the programme so that each appointment only costs £35. Privately these tests could cost in excess of £100, just for the ECG and consultation.

To book an appointment at the free screening or for more information, go to