Sunday, 17 May 2015


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, friends, and carers.


I’ve spent the past week scribbling down facts and thoughts and feelings about Prader-Willi Syndrome. Trying to explain and yet only scratching the surface. (With PWS people’s tendency to skin-pick, maybe scratching the surface isn’t the best idiom).

I’ve said a bit about the causes, something about the characteristics, given you a taster of the food issues, explained the anxieties and emphasised the emotional aspects.

What I haven’t said enough about is love.

I used to pity the parents of disabled children. I used to look away, embarrassed,  frightened, guilty, ashamed.

I used to make snap judgements about the parents of children who were overweight, or kids who kicked off when it looked like they were old enough to ‘know better’.

I don’t like who I used to be.

I hear many parents of disabled children say they wouldn’t change their son or daughter for the world. 

I know what they mean, and yet at the same time a voice in my head screams: “Well, I would, of course I would, I would give anything to take away my girl’s PWS.” And that’s true, but I have to acknowledge that it has brought some things into our life that I am grateful for.

I’m grateful I got the chance to see her determination. I’m grateful I got the chance to appreciate the little things. I’m grateful I got the chance to realise how precarious the paths of our lives are, and how we shouldn’t waste it pursuing things that don’t matter. I’m grateful I get to love her. When I kiss my daughter tonight, like always, my head and my heart will be full of love, and that's down to her.

When I see a child or an adult with a disability in the street, I no longer avoid eye contact. I look at them, I smile, and whatever difficulties they might have I know one thing: they will have changed the lives of their family profoundly.

I don’t like who I used to be.

But I like who she’s made me be.

Video is Aretha Franklin - Baby, I Love You

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