My daughter has Prader-Willi Syndrome (PWS), a rare and complicated chromosome disorder. So on Wednesday October 26, I will be front-crawling my way up and down my local swimming pool as part of the Rule The Pool half term swimathon - raising money for the PWSA UK Association. I'm going to see how many lengths I can manage before my legs go too wobbly. Oh, and for anyone expressing the most obvious concern - yes, I will be allowed to get out of the pool for wee breaks.
Why? Well, I imagine I'll need a wee. Oh, I see, why am I doing the swimathon? Well, apart from looking mighty fine in goggles (see picture), I want to give back something to the PWSA UK. Through every stage of my girl's life, the association has been there to help us with support, advice, and information.
If you've read this blog before, then you'll be pretty familiar with the weird and not always wonderful world of PWS. It affects the part of the brain which controls appetite, growth, and sexual development. Although too weak to feed as a baby, children with PWS grow to have an insatiable appetite, and never physically feel full up. But because their bodies can't convert fat to muscle efficiently, they have to be on a strict diet, for life. If their food intake isn't controlled, they will suffer from life-threatening obesity. People with PWS are of small stature, have some form of learning disability, are unable to have children, and are unlikely ever to be able to live an independent life. Oh, and by the way, there's no cure.
That's the bad news. The good news is that nowadays, thanks to a better understanding of the condition - and to the work of dedicated organisations like PWSA UK - life in a PWS family isn't just about what the person can't do, it's about what they CAN do. People with Prader-Willi can achieve amazing things, and lead happy and fulfilling lives. Did I mention they can be really funny, too?
Check out the PWSA UK website to learn more about the great work the association does. You can also read previous entries on this blog for a warts and all, off-the-wall account of what it's like to live in a PWS family.
That's the who, what, where, and why.
Now I'm asking you to do something. Fire up Paypal or get your credit card out and donate. Whatever you can spare - no amount is too small! Do The Gift Aid thing, too, if you can. JustGiving will send your money directly to the PWSA UK.
Now, I'm off to sniff some chlorine and reinforce my cozzie gussett.
Song is Sly & The Family Stone - I Just Learned To Swim
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