Nicholas was our eldest and only son, with two younger sisters (writes mum, Sarah).

At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and basically live, all over again. Nicholas’ mental age never fully recovered, and he became the perpetual teenager in his thoughts and actions.

As a child he was cheeky and mischievous, with an amazing wicked sense of humour which he never lost. He loved martial arts and won medals for this; this ignited his passion for Buddhism, Tai Chi and meditation in later life. He adored animals and life itself. Nicholas loved melodrama and had a wealth of knowledge about cinema films. He wanted to be a paramedic.

The damage from the encephalitis was severe; resulting initially in episodes of severe psychiatric illness, schizotypal personality disorder, epilepsy, severe migraines, high blood pressure, hypothyroidism, stomach ulcers, learning difficulties including poor memory, word-finding difficulties, poor concentration, poor comprehension, and in more recent years to diabetes, cataracts, tinnitus, partial deafness, poor mobility and most recently problems with his pancreas and liver. This led to him suffering with ongoing mental health issues because of all that he had to cope with.

Nicholas at his sister's wedding in 2016

Encephalitis robbed him of the normal pathway of life; ravaging both his mind and his body. There is no doubt that life for a lot of the time was a struggle for Nicholas, as he remembered how well he was before the encephalitis; with his whole life ahead of him. We know that he dearly loved his two sisters and was so proud of their achievements and their ability to live life to the full, albeit a tad jealous as he too would have loved to have been able to achieve the same. Nicholas had infrequent and short periods of reasonable health, he passed his automatic car test, and motorbike test, first time, and during well periods found great pleasure in bike riding, sometimes with his dad Julian. The downside was that this would often be followed by days in bed as his brain needed to recover from the exertion of the concentration.

It’s difficult to quantify but encephalitis had a profound effect on every part of Nicholas’s life and our life as a family. Nicholas required 24-hour care and supervision for 20 years, whether from us as a family or from professional care staff; even when Nicholas was in care, we had contact with him every two to three days and received phone calls from the care staff most weeks requiring our additional input.

Nicholas was a caring, kind, warm, compassionate, generous and gentle person with a heart of gold. He never judged people, he never really said a bad word about anyone, there just wasn’t a malicious bone in his body, and he gave fantastic cuddles. These are not our words and thoughts but came from the dozens of people who knew and cared for Nicholas over the years; care staff, social workers, his consultant neurologist, and his friends. Despite his extensive disabilities, Nicholas did not want to be seen as different. He wanted to be part of family life and events; the delight he experienced at being an uncle was so profound, and the children’s non-judgemental attitude to him furthered his delight in them.

Any profound illness and subsequent disability is a form of grief, you grieve for what might have been, and the times that you are unable to devote to the other children due to Nicholas’s extensive needs; so you juggle and try to maintain family life but there is an underlying fracture that can’t be healed. Twice, when Nicholas was relatively ‘well’ we went to Florida Disney World. Those memories are so precious, as we were able to experience family events, and, since his death, we look back at these memories with fondness and love.

The death of an adult ‘child’ is the wrong order of life and thus rarely encountered. Despite being an adult in the numerical sense, Nicholas was a ‘child’ who required the intensive input of a child. Nicholas died unexpectedly in July 2018; as parents we have always known and talked about that fact that Nicholas’s life would be shortened, but we did not expect it the day it happened. How do we survive and move forward? As a family we are still working that out! 

*Seven members of Nicholas' family are taking part in the Great South Run in October 2019 and are writing a blog in the run-up to the big day. Read the blog