First words at five!

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by Fiona Russo

Charlie is a five-year-old girl with Rett Syndrome. 

People with Rett are often called ‘silent angels’, and this has certainly been true of our Charlie-bear.  

We’ve never heard a word from her lips – everything Charlie tells us, she tells us with her eyes. 

Another common ground with Rett sufferers is large, soulful eyes, and the eyes seem to be one of the very few areas of the body under the control of the Rett brain. 

Over the last six months, we’ve been madly fundraising toward the purchase of an eye gaze device, a computer with a special camera that tracks and interprets Charlie’s eye movements. 

With this device, she can play games, read books, watch videos, surf the internet (when she’s older of course) – but most importantly, she can communicate with us. 

If you’re thinking of the ubiquitous sight and sound of Professor Stephen Hawking speaking, you wouldn’t be far wrong.

In the past few weeks, we have finally loaded all the required software onto the new device. 

Charlie has been playing games and quickly mastered the basic moves – much faster than anyone else in the family could when we had a go!

And she loves being in charge and independently choosing. Controlling her world for a change.

Games are one thing, but the communication software is large and complex. 

We are at a bit of a loss as to where to start in supporting her, and although we’re working closely with our excellent speech therapy team, they’re almost as new to this technology as we are. 

Charlie’s had a few good looks at the communication pages, but is much happier on the games for now.

Last week, after a long session of gaming, we sat at the kitchen table together. Charlie was eating a biscuit and I was checking some emails beside her. 

I put the communication software on screen for her to look at while she ate, not really expecting anything. 

A few minutes passed and I felt a tap on my wrist. I looked up from my laptop to see this face! (Which made me laugh enough to grab my phone and snap this picture.)

Once she had my attention, Charlie started looking meaningfully from me to her screen and back. 

When I followed her gaze, I couldn’t believe what I was seeing.

It was her very first independent communication, especially for me. Check it out!!


Has there ever been a better sentence in all the world?

My pride knows no bounds.

I love you too, Charlie-bear. J

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