LIVING WITH STARGARDTS DISEASEJames' Story - Received 19 June, 2007, updated February 24, 2009 We have known that there was something wrong with James' vision since he was 3 years old. Having never passed a sight test in his life we spent many years being told that he was making it up, and simply wanted to be like Harry Potter with glasses. Eventually, last December, at the age of 10, James was diagnosed with Stargardts. Despite us, as parents, falling temporarily apart, James has coped remarkably well with his diagnosis. I guess he has always seen life pretty much the way he does now and therefore diagnosis made no real difference to him. The educational support in our part of the UK has been, so far, good. James has been assigned a specialist teacher to work with him in main-stream education. He will shortly be taught to touch type and then given a lap-top computer to aid him in his studies, he will have extra orientation at his new school, and have all his school work professionally enlarged. Given all this, and James' attitude, it has been hard to remain devastated. Added to this, I recently met Miles Hilton-Barber, a man who went totally blind in his 20s, and has still managed to climb Everest, abseil down Cape Town's Table Top Mountain and fly a micro light from Europe to Australia. Listening to him speak, I experienced what I can only describe as an epiphany. I have been so focused on the difficulties that James will face, the Statementing process and what he will not be able to do, that I forgot to appreciate what he can do. He is an academically bright child, a competent musician, with a surprisingly advanced artistic talent - and we have lost sight of that through the shock of the diagnosis. He made me realize that I was potentially limiting James by focusing on the negative, and I was truly inspired by hearing his story. We are now making every effort to teach James to have confidence, both to ask for help and to remain focused on his goals - I think that is by far the best thing that we can do for him. Updated February 24, 2009 James made the transition to middle school over a year ago and is doing really well. It has not, however, been completely plain sailing - we have had difficulties explaining the condition to all his different teachers and getting them to understand that just because he doesn't wear glasses it doesn't mean he sees well. At one point they just kept photo-enlarging his work onto bigger and bigger sheets thinking that that was all that was needed. The local visual impairment unit supports him in school , he has been provided with CCTV systems, a lap top computer, reading domes etc. He is now a proficient touch typist and despite being a typically unfocussed 13 year old boy, he is in the top set for all subjects in his school. We have had to learn to overcome practical issues (he has an A4 file for his work rather than exercise books), and as parents we have had to loosen the apron strings and let him have some freedom. The school make sure that he has one to one attention in subjects where he might injure himself (science, PE, woodwork etc.) The condition seems stable for now, and as usual he mostly accepts it as just the way he sees. He is very lucky with his friends. They make the necessary compensations for him, pointing out people in the street, searching for him when he loses them in the playground and reading what's on the board when the teacher forgets. All in all things have been OK so far, we have accepted that James sees how he sees and that he will do well despite this. Nicola Burns |