Saturday, 10 December 2011


She really didn't want to wear it at first. I didn’t blame her. Lift up your hand and cover up one eye and see how off-balance it makes you feel.

But my daughter’s eye had to be patched.

A big part of Prader-Willi Syndrome is the hypotonia (weak muscles). This muscular imbalance doesn’t just mean difficulties with the big stuff, like walking. It affects all of her muscles, including her eyes.

So, the family learnt yet another fancy word: strabismus. No, it’s not the title of a recently discovered album of Genesis out-takes. (Thank God). It means squinting, and/or going cross-eyed.

And so, for a while, to correct this, she had to be a pirate.

The brightly-coloured patches were like giant plasters you were supposed to stick directly over the eye. But our pirate, despite a few pleading parlays on the subject, was having none of it. So we attached them directly to the glasses, with a generous overlap sticking up, to the side and below the frame, to prevent her from peering round the edges.

The patches are long gone. But because of Prader-Willi, our former pirate will always have an off-kilter perspective on life. It's just the rest of us that have to do the squinting now, to try and see things from her point of view.

Video is The Muppets - Shiver My Timbers (from Muppet Treasure Island)


  1. Do you remember Paul from Spin City when he had to wear his eye patch? Overnight he developed super human powers to the point that women were falling over themselves to give him their phone number. I hope your daughter experienced similar 'powers' while she wore hers.

  2. Hello - fortuneight here - I wore a similar patch when I must have been about your daughters age, to cure a lazy eye (it was just working in sympathy with the rest of me).

    For a while it was stuck to some NHS specs, but then we moved on to having them stuck to my face. I can recall very clearly the two little clear plastic tubes on the side of each patch to "help the air circulate". And taking them off played havoc with my eyebrow.