July 29, 2007

Let me tell you the absolute truth about Amy.

When I first heard her story, I considered it to be just that. Another sick child story: Pull the heartstrings of the readers a bit, raise a few quid, ignore the calls afterwards, move on to the next one. Job done.

It's what we do.

I can remember the first time I spoke to Amy's mum, Jayne: I heard stuff about a syndrome, about not being able to walk, about how she couldn't play with her best friend - and I still wasn't that interested. I'd heard it, frankly, dozens of times before.

But then Jayne told me something I hadn't heard before.

That Amy wasn't getting any help from the NHS. Like, none. That the best anyone had offered her was the advice to "stand up straight."

So then I had a story. About the callous or uncaring or ignorant so-called "experts" in charge of the health of our children.

And I still would have walked away afterwards, to be honest.

But then it happened, didn't it: Hundreds of people began to deluge the newspaper with cheques, and prayers, and messages of support.

They were angry too. They also realised this was wrong. More importantly, they wanted to help.

Then I met Amy. My cynicism was gone.

Since our fundraising efforts have begun, she's been back and forth to Boston for truly pioneering medical treatment that is helping not just her, but other kids with Cockayne Syndrome.

Two weeks ago I met some of the others. And as much as it breaks your heart in one way, it mends it in another. You see real hope, real trust, and real endeavour in their eyes.

Thanks to t'internet, Amy's story has gone global.

The story, of course, is not Amy's alone, but that of every child, and the families thereof, who continue every day to be victims of this debilitating affliction. But through the internet, connections that may possibly never have been made have been made; families talk; the kids talk; love has been brought; friendship found; experiences shared.

I didn't know Paddy, in the true sense of "know", until a couple of months ago when we had a mini blog-meet in Birmingham. But we did know each other for at least a year before that through BCUK - and even though I'm ever so slightly funnier than he is *cough* I'll confess to have a sneaking admiration for the guy.

What he did today was unique and wonderful and bizarre: He made a Herculean effort to raise money for a little girl that he's never met, and that he only knew about because of another bloke he'd only virtually met until a few weeks ago, who himself hadn't really cared that much in the first place.

Amy's now very much my friend, and I'm proud of that.

She's also now Paddy's - and I'd like to think you're all proud of that, too.

Thank you, thank you, thank you.

Justin

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