July 16, 2007

In one part of Wirral this weekend, thousands gathered for an annual carnival to guzzle mounds of appalling fast food - with extra onions, of course - ride on precarious travelling fairground rides, watch tedious military horse displays, watch an old Dakota float around the sky for a bit, wonder where their wallets have gone, and generally complain about the fact there is no longer a beer tent.

It's meant to be a special weekend.

But the special weekend was, in fact, taking place in a hotel some five or six miles down the road.

It was the Cockayne Syndrome retreat - the first event of its kind in the UK, where the victims of Cockayne Syndrome and their families were able to meet each other in person, share experiences, swop advice, meet the medical wizards who flew in especially, and watch their children play.

Believe me: There's something special about walking into a room and seeing Amy ruling the roost; with her boyfriend Nick, proudly walking alongside her.

There were less than ten CS kids in the room - that's how rare this syndrome is - and few of them had met before. Yet those who could walk, and talk, did just just that with each other, smiling all the way.

That was on Saturday, and Row and I were only there for a short while.

Last night, though, was a fundraising gala. And that was pretty special, too. I don't know if any of you watched Britain's Got Talent - I know I didn't - but one of the semi-finalists was a dance troupe from Liverpool called MD Productions.

After a gruelling live performance at the Liverpool Empire theatre last night, they all jumped onto a bus and came along and performed for the CS kids and their families - and, well, me - for free.

There's an incredible story behind that bunch of remarkably talented kids. And last night. they were just brilliant as they were on TV, but this time in a room of around only 250 people.

I'm going to update Amy's website later this week with pictures from last night, plus the news of Paddy's forthcoming blogathon, but I wanted to put this on here:

At the parachute jump we all did in June, a quiet couple had joined the throng of onlookers. I was introduced to them briefly, and told that Christine and Ray Haigh had driven over from Barnsley especially.

They are also victims of Cockayne Syndrome: their much-loved son, Jonathan, had succumbed to it on April 12.

And they were there again last night, too, offering their support to the living, drawing support from those same families: A pretty bloody brave thing to do, I felt, under the circumstances.

This is Jonathan, enjoying his favourite meal, and enjoying a pint down at the pub:

jon1a

jon2b

He was 27.