Sunday, 16 February 2014


A Shakespearian drama has been playing out at our house today.

The heroine is an obsessive teenage girl with Prader-Willi Syndrome, who decided to save up her pocket money for a set of children’s versions of famous William Shakespeare plays. 

The villain is a butter-fingered warehouse stacker or slapdash courier driver who didn't treat the package with the reverence it deserved, leading our eagle-eyed protagonist to notice a small dent on the corner of the set’s slipcase.

This is the daughter who can extemporise for hours on the tiniest fold on the page of a library book. Naturally, the thought of an ever-so-slightly bashed-in corner is dinging around her brain like a perpetual motion pinball. 

I'll give you a quick taster: “It’s dented, isn’t it? Why is it dented? It is new, isn’t it? That is a dent, isn’t it? It’s dented.”

Trying to ignore the fact that my brain was mischievously transposing this to: “Is this a dent I see before me? The squished bit towards my hand?", I sat her down and had a chat with her about how it’s the stories that are important, and that a small imperfection shouldn’t matter. (Yeah, I know, I know, it's like a metaphor, right, for her chromosome disorder, isn't it? Well, yes. Or maybe it's just a dent that's really annoying her.)  Well, we had a chat, and I'm sure I got through, and I'm convinced that she took on board all my points, which were clearly and patiently explained. 

Yes. Yes, I am sending it back for a replacement.


It was no surprise when Shakespeare, and dents, came up in conversation around the Sunday dinner table, later.

We did have a random pop star thrown in, just to particularly bamboozle the easily-bamboozled Grandma.

My daughter (once she’d methodically hoovered up every last scrap on her plate, of course) declared: “I like Shakespeare. My box is dented. I like Romeo & Juliet. Can you see the dent, Grandma? It’s on the corner. I like Shakespeare. I like Michael Jackson.”

Classical music-loving Grandma looked perplexed. “Michael Jackson?”

“Yes, he did Thriller.” My daughter rushed the words out a little, so it was a bit hard for Grandma to catch what she’d said.

“He did what? He did Othello?”

Now I had an entirely new image in my head. Michael Jackson, as The Moor, declaring his love for Desdomona (looking suspiciously like Bubbles the chimp, in a dress), clutching a box of books. A box with a dented corner. 

Track is The T.S.U. Tornadoes - Getting The Corners


  1. Hello! We're from Belgium and have a daughter with PWS (almost six years). I discovered your blog last week and from then on, it hit me, it bit me. Every day of the last week, I looked forward to sit in my sofa in the evening to read every post you made, from 2011 till now. I had a laugh, I had a cry, I had a laugh,... It was so recognisable and it meant so much to me to read your blog. Congratulations! Thanks for sharing! Good luck to all of you!!!

    1. I'm so glad you enjoyed catching up with the blog - sounds like you binged on it like a box set! I'm glad you identified with it and recognised some of our experiences. When I decided to write it (not knowing quite how much I would end up feeling compelled to share) I hoped it would shed a bit of light on the world of PWS for people who didn't know much about it, and also to show other PWS parents that they weren't alone and their odd lives weren't quite as odd as they thought. I hope you manage to get through any bad times with your daughter and cherish the good times as much as we have. PWS is a big part of our lives, and our daughter's life, but that's all it is: a part. Hold tight, keep laughing, and you'll enjoy the ride, bumps and all.