Tag Archives: rett syndrome

My sister and I have never spoken

Clare has Rett Syndrome, a rare neurological disorder affecting mostly girls.
Clare has Rett Syndrome, a rare neurological disorder affecting mostly girls.

My sister and I have never spoken.

That’s not because we had a huge falling out as toddlers, or because I find her objectionable.

Clare never learned to speak. Well, she did utter a few words as a baby, I’m told, but lost the ability to form them almost as soon as they’d arrived.

I was a toddler then, so I’m unable to recall the sound of her voice. I often wonder what she’d sound like, and what she’d say if she could. Would she have chastised my teenage dress sense or told me my first boyfriend was a loser? Probably (she’d have been right on both counts.)

Clare has Rett Syndrome. It’s a genetic, non-hereditary disorder which mostly affects girls. As well as not speaking, she can’t walk, feed herself, and has no use of her hands.

Although she’s 36, we believe that her awareness is toddler-like.  She is a very happy soul, laughing and smiling a great deal. She adores music and loves tasty food. Sad music makes her cry. She also thinks that Dire Straits are the height of musical genius, but let’s forgive her that.

I’m writing this because October is not only Breast Cancer awareness month – it’s Rett Syndrome awareness month too.

My Mum founded Rett Syndrome UK when we were children. It’s a charity which supports the families of those with Rett Syndrome, and funds research into the disorder.

If you or anyone you know has a child who seems to be losing skills they’ve learned, who has unusual hand movements and is lagging behind in physical development, it’s worth taking a look here and asking your doctor about Rett Syndrome.