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I'm doing the Carrots Nightwalk, 15 miles in London from 11pm dressed as a carrot. Why? Because we will do anything for our children!
My son Theo has a visual impairment called Nystagmus. When he was diagnosed as a baby we were simply told that he would have problems with his vision for the rest of his life and he would never drive. We weren't given any other information or advice on how to support him, make his life easier or how to understand the condition or even explain it to him so he could come to terms with it. After years of struggling alone with nobody to talk to or understand - We discovered the Nystagmus Network) It can be very isolating being the parent of a child with a visual impairment with nobody to talk to or understand for the parent and especially the child.
Nystagmus is an involuntary movement of the eyes which seriously reduces vision and the initial focus and depth perception. My son's eyes move uncontrollably rapidly from side to side. There are social and emotional consequences to having nystagmus and it has effected Theo's confidence as eye contact is difficult and sometimes impossible and things like not being able to see or recognise his friend's faces in the playground or park. It is also a fact that visual impairment affects employment prospects.
Despite this my son is doing well at school, he is bright, charming and funny and achieves great results. He never complains, just gets on with it. However he is often tired, frequently gets headaches & migraines,. He has been bullied and teased because of his head wobble which is his way of keeping up with his eye movement to see better, he is straining his eyes all day, his eyes have to work 5 times harder than children that are sighted. He finds it hard to cope in new places, crowded places and particularly outside and ball sports are challenging. His orientation and mobility are effected, as well as crossing roads as part of the problem is judging moving objects. He has to have all his text and fonts modified and enlarged at school which can be troublesome at times. He has problems sleeping at night and is currently on melatonin to help. He is still very dependant on us his family we are very protective of him but at his age independence is something he would really benefit from somehow, we still not sure how to acheive this.
The Nystagmus network is a fantastic support group and information source for families like us and as well as raising awareness of the condition they are funding research at Moorfields hospital to find treatment for this currently incurable condition.
If I could help in some way I could be among the amazing people working tirelessly to understand this condition, promote awareness into and ultimately find a cure. One day all my questions may be answered.
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