The three-year-old Leeds girl locked in a body that doesn't work

A severely disabled three-year-old Leeds girl who is intelligent but is 'locked in a body that doesn't work' is able to communicate with her parents thanks to a device that tracks her eye movements.

Saturday, 15th February 2020, 6:00 am
Updated Sunday, 16th February 2020, 3:02 pm

Mum Dolores Cowburn, of Guiseley, said it was heartbreaking when her daughter Matilda 'Tilly' West had constant screaming fits as she was not able to communicate before they were introduced to the eye gaze technology.

Now Tilly can have conversations with her mum Miss Cowburn, 43, and dad Rob West, 39.

Tilly has Rett Syndrome, a rare, devastating, genetic syndrome that has robbed her of use of her hands, her legs, her arms and her voice.

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Tilly West

The condition will get worse as Tilly gets older and her devastated parents have been told she may never walk, will need lifelong 24-hour care and may die young.

Tilly was aged two when she started using the eye gaze, which consists of an Tobii Dynavox ipad with an eye tracking bar to track her gaze and what symbols she is looking at on the screen, enabling her to communicate.

Eye gaze technology, which speaks the word or object the user is staring at, was introduced to the family through charity Rett UK.

Miss Cowburn said: "Rett Syndrome is really cruel. She is locked in a body that doesn't work, but intellectually she understands everything.

Dolores Cowburn with daughter Tilly West Photo: Gary Longbottom

"She couldn't communicate what she needed so we would have to guess what was wrong with her.

"The eye gaze is a lifesaver. Now she has got a voice. She can tell you what she wants and when she wants it.

"She tells us if she is hungry or thirsty or if she's uncomfortable.

"She tells us when she wants to play with her friends, what books she wants to read and she tells you she loves you.

Tilly West using the eye gaze technology which allows her to communicate

Recalling the first time Tilly used the technology to say she loved her mum and dad, Miss Cowburn said: "It was mind blowing. We do things with Tilly with no feedback because we love her.

"For her then to be able to tell us that she loves us or how she feels, there's no better feeling than that.

"Tilly is an incredible, inspirational little girl and we are so proud of her."

Miss Cowburn and Mr West raised more than £4,500 to take Tilly to Canada last June for specialist physiotherapy treatment called CME (Cuevas Medek Exercises), which is not available on the NHS.

The eye gaze technology Tilly West uses to communicate.

Tilly is set for more of the treatment in London later this month and the family is fundraising for charity Just4Children, who support parents with their individual fundraising efforts through their own charity, in a bid to go back to Canada for further CME sessions this summer.

Before the treatment, Tilly could only lie or sit but can now stand for a short while, sit unaided and has taken a few steps with support, an impossible prospect before she had the CME treatment.