Friday, 16 September 2011


I sometimes forget my daughter has it.

I sometimes snap at her when she asks me for the 10th time when tea is ready.

I sometimes fail to remember that she’s not just being impatient. She’s not just tired or bored (although if she is either of these things then the intensity of her chef-bothering increases).

Having Prader-Willi Syndrome means my daughter is hungry. Physically hungry. All the time.

I could tell you about the science, and the tiny missing stripe* on one tiny chromosome that causes this. (*Stripe may not be the accepted medical terminology here).

But all you need to know is that the little switch in my daughter’s brain that should click on to tell her she’s full up doesn’t work. 

(Incidentally, the same little switch in my brain seems to develop some kind of fault within 20 feet of a cake. It must be an as yet undiagnosed syndrome. If any scientists are out there, I’m perfectly willing to help with research. As long as I get to eat lots of cakes).

She really can’t help it. She’s not being greedy. And amazingly, for the most part, she doesn’t plague me all the time for food. When her days are structured, and she has her set meal and snack times (a rigid school timetable helps here), she probably begs for grub less often than my toddler, who I believe is starting a new world religion which involves worshipping at the altar of the biscuit tin and praying to a God made entirely of Custard Creams.

So although sometimes I do forget, I try really hard not to. I attempt - not always successfully - to keep a lid on my irritation if she does get stuck in a food loop.

Because when I imagine what it must feel like to always be hungry, my heart aches for her.

Video is Bob Marley - Them Belly Full

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