Friday, 23 May 2014


This week is PWSA (UK) Awareness Week. The Prader-Willi Syndrome Association (UK) want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families. “Talk about PWS” is the strapline. 

Today the PWSA (UK) is talking about Families, in particular PWS family events organised by the association and its members around the country.

Without wishing to sound like a bigamist in the confessional box, I want to talk to you about my other family. 

We were slow starters when it came to meeting 'people like us' with Prader-Willi children. I was fiercely protective of my new baby and unsure and frightened of the new world of disability we’d hurtled into. I bunkered down, built up the defences. We’d face this. We’d deal with this as a family. Our family.

I should have raised my head above the trenches sooner. I should have been as brave as some of the parents I've since met, bringing their tiny new babies along to PWSA events. What I think they've realised, sooner than I ever did, is that there is a whole new family out there. Other parents facing the same challenges as us. Other people whose babies had been born with a chromosome glitch that would have a dramatic effect on their lives. The same glitch. The drama their child has been cast in might not be exactly the same show as ours, but it was created by the same wonky production company, with many similar plotlines, belly laughs, and cliffhangers. 

Our new family is our PWS family. 

Some of them we’ve read about and chatted to on Facebook and Twitter and online blogs. Some of them we’ve been to parks and picnics with, had Christmas parties with, spent a weekend away with (thanks to the PWSA UK, who, by the way, are very much included in this family). Some we’ve never spoken to, some we’ve chatted to only briefly, some we’ve talked for hours with. Some are strangers, some are becoming friends, some already are. 

Knowing them, meeting them, gives us the chance to feel normal, to be understood without the need for explanation. Most of all, it give my daughter a sense of belonging, friendship, fascination and fun. Meeting other children with PWS is her favourite thing to do, apart from eating. When we’re with our PWS family, we don’t need to add the ‘apart from eating’ bit, because they get it. They live in an ‘everything comes second to eating’ world, too.

We’re not all the same. We don’t agree on everything. Some of our PWS family have the positive answers we’re searching for, others have stories we’d rather not hear, but need to. Some lead lives that mirror ours, some take wildly disparate turns. Our children are completely different at the same time as being incredibly alike. 

What we are not, is alone.

Song is Sly & The Family Stone - Everyday People

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