My name is Jakob and I am 5 years old. I have an extremely rare genetic condition called CHOPS syndrome. Currently I'm one of only nine people who have been diagnosed in the world with this syndrome. My body doesn't work the same way as other kids. I do things in my own time and in my own way. The differences in my body mean that I have needed lots of time in hospital and different medical interventions since I was a baby. I now have to work pretty hard at my different therapies to help me do lots of everyday things like eating, listening and communicating, sitting and walking, and most importantly playing. I LOVE being with my family, having turns in my swing, listening to music on the radio, reading books and playing with my iPad. My family think I'm pretty special and one cheeky little boy. Thanks for visiting my page!