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Nigel (9 Oct 1968 - 29 Jan 2016)

Nigel Falmouth Train

Sadly, Nigel passed away peacefully at home on January 29th 2016 after a short illness. He had reached the remarkable age of 47.

He was born on 9th October 1968 and spent his first six weeks in the Special Care Baby Unit at Treliske Hospital in Truro about 10 miles from our home town. We did not have a second car in those days and my husband Gerry needed his car to drive to his work, so I caught the bus and visited Nigel daily.

I gave Nigel his feeds in hospital  which were long difficult tasks as there were no special feeders back in 1968. My daughter Jackie was at school, and my mother looked after my other daughter Josie. Nigel had several blood and skin tests done and he was diagnosed as having trisomy 13, Patau’s syndrome. We had no idea what this condition was but we knew we had a very poorly baby who was not expected to live more than a few weeks. After six weeks in hospital Nigel was keeping some of his feeds down, and had put on a little weight in hospital. We finally took him home and I do not have to explain how nervous we were.

Nigel was our third child, he has two older sisters, so from an early age, Jacqui then aged 8 years and Josie aged 18 months, learned to help themselves quite effectively and though I’ve often mentioned to them in later years how guilty I felt about this, they say they really can not remember it being a problem. Siblings of our children very often grow into down to earth, sensible, caring adults.

There was very little support, if any, in those early years. No Home Care Service and no financial benefits, so we struggled on caring for Nigel who was frequently in and out of hospital. Caring for Nigel and two other children on very little sleep slowly took its toll on Gerry and I. When Nigel was about 3 or 4 years old, we were encouraged to have a holiday with the girls. Nigel was to spend a week in our local hospital, so after much hesitation we had out first break in Somerset.

Nigel surviving infancy caused considerable interest within the medical profession and we were invited to attend several seminars at the Royal Cornwall Hospital, Truro, where the doctors and specialists could not reassure us about Nigel’s life expectancy, so each time he has been admitted to hospital we have been prepared, as prepared as one could be.

When Nigel was seven he learned to walk (although he would run and not stop until he hit something!). After a few years his legs began to flex and by the time he was 13/14 years old he was using a wheel chair all the time. His left eye was always a problem, with infection after infection, and 

eventually the eye was removed and Nigel has managed quite well with the sight of the remaining eye. It would be impossible to remember details of every illness, which have been numerous, and last year was an extremely worrying time. Nigel became ill with pneumonia, he spent three weeks in hospital critically ill and there seemed very little hope, but he pulled through although he is now PEG fed due to his inability to eat enough to sustain him on account of his breathing problems. Nigel has made a good recovery and copes very well with the PEG.

It would be untrue to say that caring for Nigel for 41 years has been an uphill struggle. At times it has been extremely stressful, worrying, and certainly hard work, but the rewards are immeasurable.

In the early years my self esteem and confidence were quite low but as the years went by and I made up my mind to try to live as normal a life as possible with Nigel, then the confidence grew and my ambitions were achieved. We have met some wonderful people along the way, we have done things we may not have done if life had been ‘normal’, and we have counted our blessings. Our blessings have been each other, our cheerful, supportive daughters, their husbands and children, my dear departed mother, some very close friends, and of course the best blessing has been our dear Nigel.

My advice would be, and it may not be easy at first, try as hard as you can to be positive and mix with positive people. Take each day as it comes, be flexible, be sociable, and do as much as you can when you can. Have a hobby or interest, take breaks when you can, and look after your health.

Nigel's 40th 15

I am more than satisfied with my life. If we had not had Nigel I would have worked full time, we may have been wealthier and had longer more exotic holidays, but to be honest but none of that bothers me. I managed to work part time as a secretary at our NHS Health Office when Nigel started school. For six years I did distance learning courses with Cornwall College, passed 6 exams, and have GCSE’s in English, English Literature, History, Psychology, Sociology and Law, and one student of the Year Award 1999! I am about to embark on an Open University course and I do voluntary work in the community with the WRVS.

We have, as best we can, made plans for Nigel when we are no longer here, but there is one thing that does concern me now, is life without Nigel. Maybe someone from SOFT will be there when I need the support, and I am sure they will be.

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