Saturday, 6 December 2014


"Can we line up all the people with Prader-Willi?” my daughter asked, tugging at my sleeve.

“Line them up?” I visualised a Usual Suspects police mugshot-type scenario. “Do you mean take a group photo?”


So we did. The lining up consisted more of a coralling them into a haphazard, higgledy piggledy crowd, with Santa at the centre. It may or may not have been the real Father Christmas. 

Today’s party was a festive get-together organised by parents and the Prader-Willi Syndrome Association, held in a Mormon Church Hall. The church has kindly hosted the event for the past couple of years. The same white-haired Mormon elder as last year did a Clark Kent and vanished shortly before an American-accented Santa appeared. The kids didn’t seem to twig that he only came from the North Pole if the North Pole is ever so slightly north of the centre of Salt Lake City. ‘Santa’ also put his big black wellies in it, when he said to a young lad with PWS who was wearing a roast turkey hat: “You're going to make us all hungry, looking at that!” It was a PWS party. You know, the syndrome where people never physically feel full up. Trust me, Santa, buddy, they don't need a hat to make them feel hungry.

There was a cartoon character theme to today’s do. Most people dug out Spiderman T-shirts, or Frozen dresses. Spectacularly, one mum and daughter came as The Queen of Hearts and Alice In Wonderland. There were a few onesies, and a snowman. We had couple of tantrums, some umming and yumming over the tasty, healthy lunch, loads of sticking and glueing on the Make Your Own Christmas Cards table, and various levels of dancing, from half-hearted to seriously wild.

I love these get-togethers.

The icing on the cake, or rather the pineapple on top of the sugar-free jelly, was a special goodbye from a gorgeous little red-haired girl.

Solemnly shy when she’d arrived, she’d lost her initial bashfullness and latched on to my daughter. My teenager had happily mothered her, allowing her to sit on her lap, holding on to her tiny hand as they stood swaying on the dance floor. I’d watched them, grinning, remembering my daughter cuddling her as a baby, just a couple of summers ago. Here they were again, two beautiful girls, with the same missing slither of a tiny chromosome. One tiny, one 4ft 10 and a half inches tall. Happy to buddy up.

And now, my daughter’s rediscovered friend had pottered over to me on her own as I was gathering together our coats and bags. She took my hand, and started to chat, excitedly. I had to crouch down to hear her, ignoring the strains of Let It Go coming out of the disco speakers. (I also ignored my son, in my periphery vision, bending down and miming farts in a daring reinterpretation of the song’s lyrics. At least I hope he was miming).

She told me she’d just kissed my daughter on the cheek. And then she beamed and did the same to me. It was a little smacker I'll treasure.

Song is The Autumn Stones - New Kiss

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