A MUM-OF-THREE living with motor neuron disease (MND) whose spirit was captured in a powerful portrait by an artist who once painted the Pope has been given her voice back through pioneering artificial intelligence technology.
Yvonne Johnson, 58, has been living with MND for almost six years. During that time, the degenerative neurological condition has taken much of her mobility, her strength and her ability to work – but the most painful loss, she says, was her voice.
“I used to be the one cracking jokes, leading conversations,” she said. “When I lost my ability to speak, it was like I’m still here, but not always heard. That was very hard to accept.”
Her personality and resilience were captured in a striking portrait by renowned artist Sara Pope – best known for becoming the first woman in more than 70 years to have a work hung in the Vatican. The painting forms part of Pope’s Portrait of a Voice project, which aims to raise awareness of MND and the devastating impact it can have.
Now, Yvonne has regained the ability to communicate in her own voice thanks to AI-driven technology developed by US firm ElevenLabs. The system uses old voice notes and answering machine recordings to recreate how she once sounded.
“Right now, you are hearing my voice through AI. How amazing is that?” she said. “This is my voice – but it’s being spoken through technology. Being able to communicate again changes everything.”
Yvonne, who lives in London with her husband Orville, recently travelled to the United States to speak publicly about the technology at ElevenLabs’ first-ever summit in San Francisco.
“It was an honour and a pleasure to be asked to be a guest speaker,” she said.
“Not only did we get the chance to see San Francisco, but the main reason for being there was to talk about this technology and what it makes possible.”
She explained that the system works in a familiar way.
“It’s like when you send a text – that sort of way,” she said. “But instead of it just being words on a screen, people are hearing my voice again.”
A proud and bubbly Londoner with Barbadian roots, Yvonne worked in customer services for more than 20 years before retraining in health and social care. Known for her warmth and humour, she was always on the move – cycling everywhere, keeping family and friends close and rarely without a smile.
But in 2020, during the pandemic, she noticed her speech beginning to falter. Friends noticed too – as did her GP. Months of tests and misdiagnoses followed before she was given the news in 2021.
“I was in the hospital alone when the doctor told me,” she said. “I was in shock. I asked if I could record what she was saying. I needed proof that it was real.”
Later that night, she said the reality of the diagnosis hit.
“I woke up at 2am and just cried. I was angry. I asked God, ‘Why me?’ I didn’t want to tell my family – I felt like I had to protect them.”
Eventually, she told her husband of 25 years, Orville, a mental health support worker.
“I said, ‘I have MND.’ He didn’t flinch. He just said, ‘I’m going to look after you. We have our faith, and your disease does not define you – you are still Yvonne.’ That moment meant everything.”
MND affects the brain and nerves, causing muscles to waste away. Six people die from the disease every day in the UK, and average life expectancy following diagnosis is just 18 months. Around 80% of people with MND lose their ability to speak.
“For me, that was the hardest thing,” Yvonne said. “Not being able to sound like myself. Your voice is such a big part of your identity. When that’s taken away, it feels like you’re fading.”
“That’s why hearing my voice again totally blew my mind. I forgot how cockney I was, seriously, a wave of nostalgia came over me. I actually felt torn with my emotions, feeling proud of my accent, and also feeling so emotional not having my original voice anymore. Ultimately I now have control of the identity I lost and now feel heard, seen and relevant in conversations.”
Sara Pope first encountered Yvonne through the I’ll Always Be Me campaign – a Rolls-Royce-backed project using technology to help people with MND preserve their voices. The campaign was documented in a short film which highlighted the scale of the disease, affecting around 5,000 people in the UK at any one time.
“I didn’t know much about MND before,” Pope said. “But I was shocked by the devastation it causes. When I saw Yvonne in the documentary, I knew she was the one. Her smile arrives before she does. There’s such light in her.”
The two women met at a London photoshoot early last year, the first stage of Pope’s creative process.
“I was nervous,” Yvonne said. “But Sara made me feel so special. She really saw me.”
Pope spent months painting the portrait in her Brighton studio. “I wasn’t painting Yvonne’s illness,” she said. “I was painting her resilience, determination and hope.”
When Yvonne saw the finished work, she said it left a lasting impact.
“I saw my personality in it,” she said. “It’s not just about me – it’s about all of us with MND. Even when your voice fails, you still matter. You’re still heard.”
The portrait was later auctioned at a fundraising event in Aberdeen, raising £15,500 for My Name’5 Doddie Foundation, set up by rugby legend Doddie Weir.
Nicola Roseman, chief executive of My Name’5 Doddie Foundation, said the project highlighted the human impact of the disease.
“You only need to spend five minutes with Yvonne to see how perfectly this portrait captures her,” she said. “MND takes so much – which is why we are determined to fund research that brings hope.”
Since 2017, the charity has committed £20m to MND research.
“MND isn’t incurable,” Yvonne said. “It’s underfunded. That’s what needs to change.”
To support research into a cure for MND, visit myname5doddie.co.uk.
