Tuesday, 17 December 2013


Carrying a fake cake and singing about mountains of grub; these two things would not necessarily be high on my list of Things To Give Prader-Willi Syndrome children To Do At Their School Christmas Show.

And yet, there she was, my daughter, the one with the obsession with eating and an inability to feel full up. Ambling into the school hall to the strains of the Oliver! soundtrack, carrying a giant, delicious-looking chocolate Yule log. It’s safe to say alarm bells were ringing in my head. Loud ones, marked IRONY.

But it didn’t seem to upset her. She sang, with her own unique mix of shyness and gusto (shusto? gusness?), enjoying the song, which is like every PWS kid’s dream request list:

Food, glorious food
We’re anxious to try it
Three banquets a day
Our favourite diet

Twenty minutes later, she was hula-ing in a grass skirt. (It was a Christmas holiday, apparently, if you’re wondering where the tropical theme surfaced in the special school’s festive performance). The “What the Aloha was that?” section was in between Mary & Joseph on a wheeled donkey, and some dancing Christmas trees.

I love her school shows. They’re ramshackle, random, rip-roaring, rousing and I’m running out of ‘r’s. I can’t properly describe the feeling I get when I watch; it’s wrapped around my heart, but trying to pin it to the page unravels it, and I want to stay bound.

Video is Food, Glorious Food, from Oliver! (The Musical)

Related Posts: