Health and wellbeing

Funding level: £1,001 to £5,000


On September 16th 2015 our 22y old son Tom died unexpectedly from a sudden cardiac death whilst on his way home to pick up his belongings and start a new life. In fact, 12 young people die every week in the UK from such cardiac causes, 80% of whom, like Tom, have had no prior symptoms. WE now know that a simple ECG (heart test) could have picked up his problem, which in turn may have prevented his death and our heartache.

In this project #CRY4TOM we aim to provide cardiac screening to young people aged between 14 and 35 years locally in our community in South & East Cornwall. We passionately want to help to prevent death of other people's sons & daughters, as well as heartache, like ours, of their parents and friends. As the UK Government does not yet screen for these problems, it has fallen to people like us, the families & friends of the young person who has died, to raise funds to provide appropriate screening in our own locality.

Following Tom's sudden & untimely death, it took 8 months before we were able to read a copy of the pathologist's and coroner's reports before Tom's inquest. Eventually, we discovered that he had had a very enlarged and dilated heart which had resulted in a cardiac arrest and thus a fatal road traffic accident. We learned of the Inherited Cardiac Conditions at St Georges Hospital, London and its work into sudden cardiac death and our truly excellent GP referred our family for investigation. We were very thoroughly investigated, treated expertly and were reassured by the results and have taken part in a clinical research project to fund out more about this condition.

We then discovered that the team from St Georges would travel to any part of the country to carry out specific cardiac screening for young people. To do this, we have set up a Thomas Demaine Memorial Fund into which we can deposit all donations. It is ring-fenced and all the funds will go towards local screening in Tom's name. Whilst the memorial fund is under the auspices of the main charity Cardiac Risk in the Young (C.R.Y.), it is a new initiative and has to date raised just over £4,000 since 2015. This has been raised in a number of ways such as bag-packing at supermarkets, local collection pots in schools and sports & leisure centres, cake sales and sponsored runs. These activities will continue.

However, the team from St Georges costs £5,000/day; they carry out ~100 ECGs/day. The main charity keeps the first £3,500 in order to cover core activities such as bereavement counselling. It is therefore most cost effective to hire their services for 2 days together. ECGs are carried out by specially trained cardiac technicians who are able to pick up any suspicious ECG changes. Therefore, any ECG that is not entirely normal will be repeated with additional ECG leads. If still abnormal, the visiting CRY cardiology fellow will be able to carry out a cardiac echo at the venue. After review with the tests and doctor, any young person with concerning tests will be referred to a cardiologist with expertise in electrophysiology. One serious abnormality needing treatment is discovered for every 300 people screened. Treatment, which is life saving, may be with drugs, an intra-cardiac defibrillator (ICD) or occasionally surgery. Genetic tests can also be carried out as about 50% of cases can run in families.

Free cardiac screening in our local community will have a huge impact. Not only will abnormal ECGs be picked up and young people treated, but young people with a normal ECGs can be reassured that they have no problem, such is the specificity & sensitivity of a correctly interpreted ECG.

Funding from AVIVA will allow this screening to take place before the end on 2019 and potentially double the number of young people screened locally. In turn, this will prevent death and a lifetime of sorrow. Voting for this project is WIN WIN for people who themselves can benefit from screening.

#CRY4TOM - Cardiac Risk in the Young Thomas Demaine Memorial Fund (for cardiac screening)

Moment of Pride

Our son Tom was always helping people. A keen rugby player & sailor, carrying out heart screening for his friends and team mates locally would make him proud and ensures that he goes on helping people after his death. That makes us very proud and we know that he would want us to do this.

Location: Cornwall, UK