We began supporting Harry when he was 16 months old, he has struggled with seizures since 5days old, he also suffers with respiratory complications. He has Todd’s Paresis which leaves him paralysed on his left hand side following the seizures and he has external Hydrocephalus amongst other complications. Harry recently had his NG tube replaced in Sheffield Children’s hospital to have a Gastronomy tube inserted where he is topped up with prescribed milk as he struggles some days to take anything orally and medications. Harry has struggled to meet his developmental milestones throughout, and has failed to thrive in areas that we take for granted. Harry has been having private physio to support his development. Recently at 21 months old after many tests Harry’s parents have been given a diagnosis after chromosome testing showed that he has duplicated 15q11.2 chromosomes. This not only means that they have an answer as to why Harry struggles as he does but also unfortunately means the diagnosis is life long for little Harry and he will progressively become worse, with risks of future complications for him being greater. The daily routine of appointments, feeding pumps, medications and caring for Harry’s needs has been lifechanging for the family, but big brother Kian (7) has been incredible throughout. The family struggle to find routine with the volatility of the seizures and recovery time amongst all of the other medical needs Harry has. A simple day out can take hours of preparation. With the diagnosis comes the need for more equipment and support which sadly isn’t provided on the NHS, the family are desperately wanting to provide Harry with the most comfortable life as possible, as are we as a charity.