Wednesday, 12 October 2011


I’m really enjoying writing this blog, digging through my photo albums, shaking up the memory banks for the old and rushing to the keyboard to record the new.

Last night, I looked at the stats and saw that the blog had passed the 10,000 page views mark. In the grand scheme of internet traffic, that may not sound impressive. Well, to me, those figures mean an awful lot.

It means that more people know about Prader-Willi Syndrome. Hopefully, it means that I’ve been able to explain a little about what life is life when you live it with a disabled child. I’ve tried to be realistic and not soft-soap the bits that are hard to bear. But I’ve also tried to highlight the bits that are hard to beat.

I’ve had a few parents of children with Prader-Willi Syndrome contact me to say they’ve found A Drake’s Progress useful, and that they don’t feel like they’re the only person going through what they’re going through. That’s the best feedback of all. I wanted to write something that was informative, but that dealt more with how it feels to live with PWS, rather than concentrating on detailed medical nuts and bolts. (Although, come to think of it, Straight - a post about my daughter’s spinal operation - did actually mention medical nuts and bolts).

So thanks again for clicking your way here. I’ll keep doing it if you keep doing it. And maybe even if you don’t. Talking to yourself is underrated, and much misunderstood, in my opinion.

Today’s music had to be a 10,000 Maniacs song. (It was either one of theirs, or posting Tenpole Tudor’s Swords Of A Thousand Men ten times, and that was just too much effort).
These are days
These are the days you might fill
With laughter until you break
These days you might feel
A shaft of light
Make its way across your face
And when you do
Then you’ll know how it was meant to be
See the signs and know their meaning
It's true
Then you’ll know how it was meant to be
Hear the signs and know they’re speaking
To you, to you
10,000 Maniacs - These Are Days


  1. Got to admit I'd never heard of Prader-Willi Syndrome until I read your blog. I suspect many other readers will be the same. Always an enjoyable read, and a bit of an eye opener at times, and if it helps others in the same situation all the better.

  2. Thanks, Andy. You're not alone: we'd never heard of it ourselves until the doctors told us about it.