I am a 3 year old boy with a rare genetic disorder. My condition affects my muscles all over my body. I am a full time wheelchair user, I am non verbal and I require medicines to control my dystonia. The medicines make me very floppy and sleepy. I love hearing people read, music and listening to people talking. I do not have any challenging behaviours and love to have cuddles. I am nil by mouth and have a PEG. I require oral suctioning to help me manage my secretions.