Nihaal was born at term with a normal delivery. He was slightly delayed up until 8 months and I was told this was normal. He had nystagmus in his left eye and then both eyes. He had an MRI at 1 year of age which confirmed lots of abnormalities and a poor outcome. As Nihaal developed it was slow progress, but he was determined. Nihaal talked, used a K walker, was toilet trained and could eat without difficulty. Then age of 8 He stopped using a walker frame and used a manual wheelchair. He needed a pace maker,then lost his ability to use his wheelchair by 12 years of age. He lost his ability to talk at 13, his ability to eat at 14 and was nil by mouth. He has a gastrostomy and now uses two inhalers to help with his breathing, especially at night. Despite all the above he is a happy and an amazing boy that always has a great sense of humour.