At the birth of my fifth child, Harry, I was immediately struck by his unusual appearance, and raspy breathing. For the next 6 months we made many futile trips to the GP’s surgery and hospital with serious concerns about Harry’s breathing and inability to clear his airways. Nobody was able to give us any answers until, eventually, we were referred to a geneticist who, following an Array CGH, provided us with three pieces of information; a diagnosis of a rare chromosomal deletion (2q37), confirmation that Harry’s deletion was ‘de novo’ (not inherited) and the contact details for Unique. We soon discovered that Unique was literally the only place where we could find any guidance as to what Harry’s diagnosis really meant in terms of his development and what we might expect during his childhood and beyond. It’s impossible to overstate what the support from the team, together with the Unique information guides, gave us in those early days. We have been involved with Unique ever since (2011) and, having recently taken a step back from a 35 year career in the international shipping industry, I am thrilled to have been given the opportunity to serve as a Trustee of this extraordinary charity.
