On the 12th September 2015 Andy and I surprised Tom on his first day as the Deputy Manager of B&M at the opening of its new flagship store. At 5am four days later, I had a knock on the door by the Police; Tom had suffered a fatal accident on the A38 just after midnight. I was alone as my husband, who has a 44y old kidney transplant, was away in Birmingham at a meeting about transplantation for which he volunteers.
We did not see Tom's post-mortem report for another 8 months, just before his inquest. Tom had a very large heart, probably causing cardiac arrest thus resulting in his accident. He had died from Sudden Adult Death Syndrome (SADS), becoming one of the statistics - 12 young people die every week from SADS - #12AWeek.
We were eventually referred to the Inherited Cardiac Conditions team at St George’s Hospital in London. Andy and I together with our other two children, Lucy and Oliver, had thorough heart testing; the medical team was fantastic! Fortunately, we were not at risk of sudden death.
We now know that it is possible to pick up the vast majority of young people at risk of SADS with a simple ECG. The Government does not currently offer screening; until it does, families like ours who have lost a young person must raise funds to ensure that it can happen. Through the Cardiac Risk in the Young (C.R.Y) charity we have set up a ring-fenced memorial fund to collect donations for local screening. The main Charity has a screening team that can travel to our locality and, with their expertise, they can screen 100 people a day. To cut down on any overheads it is most cost-effective to screen for two days at a time, especially when travelling down to Cornwall!
Three years later, we now feel strong enough to make the commitment to raise the funds for heart screening for young people between 14 and 35 years of age in our own community. Two days’ screening costs ~£10,000 screening >200 people, that's ~£50 per person - a challenge! We have already been fund raising by many means. We have had fantastically positive responses from all the people who knew Tom, not surprising on reflection as he was such a loving, caring and funny chap! His old medical school rugby team have started a memorial Alumni match with Thomas Demaine Shield; his gig-rowing chums are setting up a Thomas Demaine race; his old schools have collected money via non-uniform days and cake sales and have a 24 hour 'Musicathon' planned; friends have undergone sponsored swims and runs. We have other events planned, but the sooner we can start the screening, the better for the young people in our locality.
We really hope that we can attract donations via crowdfunding. All money goes directly towards our local screening efforts. Nearer the time when we can book a screening date young people will also be able to book a screening place on-line – we think that it is a WIN-WIN situation!