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Overcoming isolation: Artist with Motor Neurone Disease who paints with her eyes voices support for Lifelites

Sarah Ezekiel

Sarah Ezekiel was diagnosed with Motor Neurone Disease in 2000, when she was 34 years old. At that point, she had a little girl and was pregnant with her second child. Her symptoms included slowed speech and weakness in her limbs. Today she can no longer speak nor move her body.

But now, with the help of Eyegaze, an adaptive technology that enables her to use a computer communicate and paint, she says her situation has remarkably improved. She has been able to access the Internet, write emails, read, and ‘speak’ just by moving her eyes across the screen.

Sarah’s dream has always been to become an artist. She says, “My diagnosis was like a thunderbolt and changed my life forever. I was absolutely terrified and in total shock. Then I discovered that Eyegaze technology can be used to draw and paint. Having studied art and art history, I had always wanted to be a fine artist. My surroundings suddenly became more colourful and I felt a new lease of life.

“Communication is a human right and is imperative. I felt frustrated when I lost my speech and it’s even more difficult for children to be unable to express themselves.”

Sarah Ezekiel is a Lifelites patron advocating the importance of technology to communicate, paint and play. The small charity Lifelites is donating Eyegaze as part of their packages of special technology to give life-limited children using hospice services the chance to play, be creative, and communicate, even if the only part of their body they can move is their eyes. Eyegaze makes it possible for these life-limited and disabled children to paint pictures, play games, write and communicate by tracking the child’s eye movements enabling them to move the cursor around a computer screen. With the help of this amazing technology, children who struggle to communicate with their family and their carers are able to do so – often for the first time.

With Eyegaze, children who have limited movement in their hands or are unable to speak are given the unique opportunity to express their needs, thoughts and emotions. They can tell their carers what they would like to eat or drink and can even tell their families that they love them – often for the first time. Through Eyegaze, children can enter and stay involved in the world around them for as long as it is possible.

Lifelites has been donating life-changing packages of technology for children using hospice services for over 20 years, and they support every children’s hospice service across the British Isles. Their aim is to continue to provide accessible technology and ongoing support to ensure that disabled and life-limited children have a chance to escape the confines of their conditions and join in with the world around them for as long as it is possible.

 

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