Just over Two years before his death Nick was diagnosed with a syndrome called Familial Adenomatous Polyposis (FAP) which is an inherited pre-disposition to form polyps ( like small cysts) in the lining of the large bowel or colon. FAP results from small changes in the structure of certain genes in a persons DNA - modifications which we are all susceptible to from conception. Over time some of these polyps may become enlarged and turn cancerous - although this had not yet occurred in Nick and is extremely rare in young people below the age of 35. The problem usually remains localised in the bowel and it was previously considered highly unlikely that other tumours would occur elsewhere in the body as a result of FAP and particularly in the stomach of one so young as Nick.. The stomach is therefore not routinely investigated in FAP sufferers.
The recommended management of Nick ( in common with others of his age) was by annual colonoscopy – internal fibre-optic investigation - to monitor the number and any change in the character of polyps in the bowel, pending later consideration to surgery preventative removal of the colon at an appropriate time, possibly on completion of his A-Levels or University course.
His last such colonoscopy, carried out in December 2001, showed no appreciable changes and his family were all very relieved at that time, since the short-term outlook was extremely positive.
No link has yet been definitively established between Nick’s FAP and the Gastric Cancer he contracted, however comparative data is insufficient and research simply not far enough advanced in the UK to absolutely rule it. This, for many in the population, creates an unacceptable unknown - and it is impossible to conceive that Nick was simply the unluckiest man on the planet.
Current evidence suggests that the incidence of FAP in the UK population could be as high as 1 in every 2,500 people, which would mean that there were nearly 25,000 sufferers in the UK. Bowel Cancer currently kills 16,000 people in the UK each year with around 100 new cases are diagnosed each day - and you don’t catch bowel cancer.
If polyposis is left untreated into middle life it will cause Cancer. FAP sufferers are, therefore effectively walking around with a genetic time-bomb inside them which is programmed to “go-off” when detonated by an, as yet, unknown catalyst. Yet screening is inconsistent, awareness is low and research poorly coordinated.
This situation requires changing and is the underlying reason why we have established the Nick Everton Trust in his memory. To ensure that his tragic death will be marked and used for some positive purpose to help other young people like him avoid similar suffering and to continue his own ethic of helping others.