At PIP-UK we want to tell the world about little known syndromes so we can all learn and support each other.
I first met Sam (founder of PIP-UK) when we were both 18 on our first day at our first ‘grown up’ job. Little did I know then that we would even still be in contact this many years later, let alone the impact she, and her family, would have on my life.
When Sam’s son was born, we did the traditional visit once they were home, cooing over the new arrival, remarking on how cute and well behaved he was. It was only when he was due to go for surgery I understood he had a ‘syndrome’, but still didn’t really understand what it meant.
Even at our first PIP-UK event, I felt more than comfortable trying to persuade unsuspecting members of the public to buy our cakes and books, but when questioned about the charity, I would refer to Sam.
Usually when you ask expectant parents whether they’d like a girl or boy, the answer, whether truthful or not, is ‘we don’t mind as long as it’s healthy’. But what happens if the child has a rare syndrome? Who or where do you turn to next? This is the main part I took from Sam’s story and now I have researched more into Poland Syndrome and other lesser known syndromes.
It is my motivation to help build awareness of such syndromes, in order to provide the support for such parents. In my mind, every person we can help, no matter in how small a way, is a victory step on the path to our goals.
So if you happen to come and see us when we have a stall, I make no apologies for coercing you into buying that cake you’re not sure you want and now if you ask what our charity is for, you’ll have trouble shutting me up!