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Neil in West Lothian, Scotland

Neil’s Story – Written by his Dad – As of October 13, 2009

Neil is 11 years old and lives in West Lothian in Scotland. The first indication that he had a problem with his eyesight was when he was 5 or 6 years old, but it wasn’t until 2007 when Neil was 8 that he was diagnosed with Stargardt’s Disease.

When he was first diagnosed with the condition I found it very hard to come to terms with, and continually wondered “Why Neil” but having seen him adapt his life I now realise that there are worse things out there and what is important is that he gets all the support and help that he needs.

Neil is trying to live as normal a life as any other 11 year old boy in Scotland. He regularly plays football (soccer that is for anyone reading this in the US), and as one of the coaches of his team it amazes me every time I see him score a goal or pick out a long pass. It is incredible how he has adapted his peripheral vision to be able to cope with the game. He does have difficulty on bright days (we don’t get too many of them in Scotland though!) and also when dark starts to come down when we are training. Watching him play, you would never know that he had a disability, in fact, apart from the other coaches, none of the other parents are aware of his condition and have never mentioned noticing anything.

Neil’s other favourite pastime is golf. He recently joined a golf course in Scotland and plays quite regularly with either myself or his friends. He needs help to spot the ball most times when he hits it, but as he is getting more used to the game he is able on more occasions to find the ball himself. He has a great bunch of friends who always make sure that they help him when he can’t see the golf ball, and Neil is becoming more and more comfortable asking for this help from his friends. For quite a while Neil was reluctant to talk about it, and wouldn’t have asked for this help.

At school Neil’s teachers are very aware of his condition, and do everything they can to ensure he gets all the support that he needs. They ask Neil where it suits him to sit in the class to see the white board, they print out homework in bigger print and make sure that the colour of the paper is suitable. The teachers also make sure that Neil’s friend Glen sits next to him in class as Glen helps Neil a lot when trying to read off the board. Neil uses a magnifier to help him when reading, and he has one at school and one at home to make sure he is always able to keep up with his reading.

Neil will be going to High School next year in 2010 and this is the next big hurdle we all face, but I am confident that because Neil has so many friends from his primary school and also from his football team he will settle in well and adapt as he always has so far.

Neil would like to talk to anyone of a similar age who has Stargardts disease, and you can contact us on the following e-mail address: