Sarah

Motor neurone disease (MND) affects over 5,000 people in the UK. Yet, for Sarah Ezekiel, her diagnosis became the catalyst for extraordinary artistic achievement. Using ground-breaking Eyegaze technology, she’s created powerful art and theatre while raising awareness about assistive technology for disabilities.

Early MND Symptoms and Devastating Diagnosis

Sarah, who has been a patron of Lifelites since 2018, was just 34 years old when she learnt she had MND, an incurable neurodegenerative condition.

An artist, full-time mother to a young daughter Aviva, and pregnant with her son Eric, the news Sarah received in April 2000 left her devastated and wondering how she would bring up her children and continue to express herself through her art.

Sarah first realised that something wasn’t quite right when her speech became slurred and she noticed a weakness in her arm. She dismissed those as pregnancy symptoms, hoping things would clear up once she had given birth.

The devastating diagnosis left Sarah suffering with depression and feeling like there was no point in going on. Her husband provided no support or understanding and Sarah eventually asked him to leave. There followed an acrimonious divorce that did little to help Sarah as she struggled with her new life, coping with a disability she knew very little about.

At her local Marie Curie hospice, Sarah found some strong support. This is where she met Dr Adrian Tookman, who has remained a friend ever since.

“[Dr Tookman] was the first person to believe in me, and helped me to get over my depression. I don’t think I’d be here if it wasn’t for him.”

Sarah’s symptoms progressed rapidly, as she began to lose her mobility and the ability to speak.

How Eyegaze Technology Revolutionized Communication and Creativity

As she learned to live with MND, a revolutionary piece of technology offered her the ability to continue producing art. Eyegaze tracks the movement of a person’s eyes, enabling them to control a computer. Lifelites has provided this amazing technology to children’s hospices for over 10 years.

Using special software, Sarah began to create art through Eyegaze. Her first finished piece was an abstract portrait called ‘Peaceful Warrior’, which Sarah says “captures her despair” at that time in 2012.

Since then, her work has since been exhibited all over the world, including at the Royal Academy Schools.

Eyegaze has also become Sarah’s way of communicating. As MND slowly took her voice, the technology allowed her to continue communicating and expressing herself.

World’s First Eyegaze Theatre Production: Ms MaNDy’s Adventures in Wonderland

Eyegaze has also enabled Sarah to achieve a world’s first: she has written and directed a play of her life using the eye-tracking technology. Entitled Ms MaNDy’s Adventures in Wonderland, the show has been performed at venues in both Manchester and London.

The colourful and vibrant show brings to life both Sarah’s story and who she is as a person through drag, music, dance and generative AI. It highlights her struggles living with MND with humour, warmth, honesty and a whole load of glamour and flair!

We caught up with Sarah after a triumphant showing of ‘Ms Mandy’ in June to a sell-out audience at the JW3 Theatre in June 2025.

How do you think the world sees you and other people living with a disability?

It depends on the person, I think! Some people treat me the way I was before I became disabled and some think I’m not all there. Some people need education about disability.

How do you see yourself?

I see myself as a mother first of all and as the artist I always dreamed of being.

How does it feel to have written the world’s first theatre production using Eyegaze?

I haven’t really thought about it because it happened quite naturally. It is imaginative, truthful, sad, and it’s great fun, too.

What do you hope it achieves/your ambitions for the show?

I would really like to sell the show so that as many people as possible can see it. I think it raises awareness of MND and disability, which can only be a good thing!

Finding Hope After MND Diagnosis: The Role of Hospice Care and Support

How do you manage to stay positive?

I’m so busy I don’t have time to dwell on the negative side of MND.

When you received your diagnosis, it must have been a huge shock. How did you react?

I was absolutely petrified! I knew nothing about MND and I was really worried about my children; everything was very difficult. I also didn’t think I would survive for very long.

What do you hope this project does to shine a light on those living with MND or have a disability that restricts or prevents communication?

I hope it will inspire them and make people realise that anything is possible. I hope people with terminal illnesses and disabilities, and anyone who thinks their life is unbearable, might gain hope from the show. I want my story to be known. It’s a story of determination, creativity and hope. At the end of the day, I want to inspire people to never give up, however bad life seems. Who can know what will happen?

Tell us how Dr Tookman helped you and the impact that help had?

After my diagnosis I was terribly thin and very depressed. Doctor T treated me and I don’t think I’d still be alive without his help and support.

AI Art Creation with MND: Using Midjourney and Eyegaze Technology

How did the Eyegaze change your life after your diagnosis?

After losing the ability to use my hands, I thought I’d never create again. Eyegaze enables me to create which I’m really grateful for. It is everything to me as I can’t live without creativity. Every day I create something, thanks to Eyegaze.

Tell us about the art you create with your eyes that also features in your play?

I’m now using Midjourney AI to create art which features in the play. It’s easier to create using AI and gives better results.

What the Future Holds for Inclusive Technology

You’re a Patron of Lifelites – how important is that to you?

I feel honoured to be a Patron of such a wonderful charity. I hope that my patronage will help donors realise how vital the technology Lifelites provides is.

How important the technology that Lifelites provides is for children and young adults?

Technology changed my life and made everything possible. I know how important it is and how much Lifelites helps children and young adults by providing technology like Eyegaze . 

With the advances in technology what do you think will be possible in the future to help people living with disabilities like MND?

I believe that people with MND and other disabilities will be able to lead a better life and achieve more than ever. I look forward to the time when life with a disability will be easier and the creative needs of disabled people will be met through technology like Eyegaze.

Simon Pitts, Head of Fundraising and Communications at Lifelites, said, “We are extremely proud to have Sarah as a Patron and grateful for the continued support she provides the charity. She is truly inspirational, and with her new show she has demonstrated the amazing creativity people living with a disability can achieve if given the chance through inclusive technology like Eyegaze.”

Below is a video that we shot with Sarah in 2020 that shows how she uses Eyegaze to create her stunning artwork:

You can also see more of Sarah’s work by visiting her website.