Saturday, 11 June 2011


The moment had arrived. The invitation to join the people in white coats in that room.

You can spot that room easily. It’s just as drab and grey as all the other rooms, except it has cheap, flowery curtains and a box of man-size tissues on the table (with the rest of the multi-pack stacked in the corner). The emotional forecast in that room is for torrential tears and persistent weeping, with the chance of heavy sobs. Think Butlins.

The three and half weeks of waiting were over. The blood tests and investigations had finally produced a result: our daughter had a very rare chromosome disorder. We were given a printout of a website page, telling us in black and white what this meant. I felt like I'd been punched in the chest. The name of our daughter’s problem was Prader-Willi Syndrome (named after two of the Austrian doctors who discovered it).

At that time, most people knew me by my old nickname, which came about by someone shortening my maiden name, and adding ‘y’ on the end. Making me ‘Willy’.

So my brand new baby girl had just been diagnosed with a life-long, potentially life-threatening genetic disorder with a stupid-sounding name that matched my stupid-sounding name. Because things obviously weren’t quite surreal enough.

Incidentally, many people in this world still call me Willy. Including my husband, who - when he shouts out loudly to me in the aisle at Tesco - resembles nothing more than a Tourettes sufferer, mid tic.

Rufus Thomas - Willy Nilly


  1. I know that room.

    From my fourth floor isolation room I could look down into it in the first floor of the children's ward in the opposing building.

    We were expecting our little one at the time and for all the hell I was going through I used to think "I hope I'm never in THAT room".


    This is a wonderful blog. Life really does deal us some blows. I hope you find writing the same therapeutic release that I do.

  2. Thanks. I'm finding it very cathartic. And I'm enjoying picking the songs, too.