I was two years when I was given a diagnosis of neurofibromatosis. Although I don't remember, I was very ill at two and half years old and had to have major head surgery to remove the bottom half of my brain from my spinal column, as it had fell down it. Anyway I finally recovered after being in hospital for 3 months on and off, and am still here to tell my story.
I went to a mainstream school, kings Norton boys. I love school so much but sometimes my Illness takes over me and I can't go. I get very tired easily; I want to do things but my body stops me. I do think sometimes "why me?" But my mom and dad always say "because you're special and like no other". Sometimes I feel lucky because you could say I have 2 homes, my mom and dad's and them the children hospital. I have to go regular checks-ups. With different consultants. But they are all fab with me. I've been going to the children's hospital since I was 10 months old, so they know me well and always make a joke about my notes as there is that many they have to bring them out on a trolley!
I'm very happy child, although I don't have much confidence and can get very sensitive. Some mornings I get up feeling great, but by the time I get washed and dressed, I can become very ill all of sudden, and this is just how my life will always be. So I just got to to try and plod on- onwards and upwards is what I think.
I may have a long life illness, but I'm not going to let that beat me. People stare me and make nasty comments but I just ignore them. I do have a wheelchair, but because people stare at my disfigured face when I use my wheelchair, I try to use it on holiday and walks only. I do have learning difficulties and I think I have a younger mind than my peers, but I also think this has something to do with my brain tumour. But at the end of the day I am just the same as everybody else but only with an illness.
Danny (C2U Intern 2020)