CLICK HERE TO MAKE HARRY'S LIFE A BETTER 1 THANKS
£480 raised
12 contributors
5 Years running
Dear Reader,

I am Harry Nellist. I am eight years old. If you visit me, I won’t see you, not because I don’t want to, but because I am completely blind. If you speak to me, I will hear you, but I won’t answer, not because I don’t want to, I can’t. I ...
Dear Reader,

I am Harry Nellist. I am eight years old. If you visit me, I won’t see you, not because I don’t want to, but because I am completely blind. If you speak to me, I will hear you, but I won’t answer, not because I don’t want to, I can’t. I recognise only about twenty spoken words and respond through body language and making basic sounds. If you touch me unexpectedly or make strange or loud noises I may scream or appear to be behaving badly, but I cannot help it. I am unable to express my fears in any other way. Nor can I describe any pains or illnesses affecting me.

Following visits to hospitals all over the country, and being examined and tested on occasions too numerous to detail, I have been diagnosed with a condition called Leber’s Congenital Amaurosis, - L.C.A. for short. As well as the problems already described, there are many other difficulties associated with this condition. I am unable to walk or move about freely, and require specialist equipment even to stand. A condition known as global delayed development has slowed any potential improvement in my overall situation. Autism has also been diagnosed, as well as a severe sleep disorder. Problems are now increasing due to my rapid growth rate. Most people I encounter consider me to be much older than I actually am.

You may ask whether or not I have any quality of life. Yes I do! You should hear me laugh out loud when I feel the wind on my face or when I hear the voices of my parents, family, friends, and devoted carers, especially when they sing to me, or play music I like. I reach out and want them to touch and hold me. My world revolves around routine. Any interruption to my normal routine causes my anxieties to increase, with a consequent adverse effect on my behaviour.

Why am I asking you to care? My parents want to look after me at home and have tried desperately to make life as comfortable as possible for me, considering my condition, but looking after someone like me is extremely expensive and stressful. They are grateful for the provision of a measure of respite care, which enables them to cope day by day, and they have already adapted our house as far as possible within their means. They have now been awarded a grant from the council to meet some of my future basic needs and are grateful, but unfortunately the present proposals will mean that I am restricted within the house, and will not, for example, be able to eat with my family.
Can you help them? My parents, Alan and Sam would be more than happy to provide you with any further information you may need, and would be grateful for any support or contribution of whatever size you may be willing to offer.Please note fees apply from donations when payment made on here.
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