Laurence Brewer, from Bolton, is using pioneering technology to record 1600 phrases and sentences that will enable him to preserve his voice for years to come.
If he completes the recordings he will be the first known MND sufferer in the UK to successfully bank his voice using the software – and it will enable him to leave a lasting legacy for his 13 month old son Stan.
His story is told on Inside Out North West, BBC One on Monday (March 7th at 7.30pm).
Laurence, who works at Salford University, was diagnosed with the degenerative illness three years ago and told that he may only have between two and five years to live.
There is no cure for the disease, which results in the loss of mobility in the limbs and difficulties with swallowing, breathing and speech. In many cases, MND sufferers lose their speech completely.
Many use a voice synthesiser, choosing from a selection of pre-recorded voices to communicate with – the same type of technology used by Professor Stephen Hawking. But the software Laurence is using is different in that it enables users to communicate using recordings of their own voice.
For Laurence, 43, and his partner, Danijela, it’s a major concern that their young son could grow up not knowing his father’s voice.
He is now working tirelessly in his spare time to record the 1600 sentences and phrases the software needs to create a whole database of speech – all in Laurence’s voice. It’s a long and time consuming process.
Laurence says: “I think personally that I wouldn’t be doing it if it wasn’t for Stan. I wouldn’t have that motivation, I really don’t. Knowing that he’s around…passing that on, it’s a key driver for me.
“If my voice goes within the next six months he might not recognise me, recognise my voice particularly, and also in five years time if I have the voice banked then he can hear what I sounded like or an idea of what I would have sounded like. So it’s a memory.”
“I quite like the idea that the technology’s not very advanced, it’s not word perfect and I imagine that the final outcome will be a bit like a Lancastrian dalek which makes me smile quite a lot. I quite like that idea, that Stan will hear that and it’ll be part of me and part of my cultural identity.”
It was while researching the disease on the internet that Laurence’s partner, Danijela, came across the new type of voice software, called ‘Model Talker’.
Danijela says: “I learnt that of all the losses with MND, that most people who have been affected with MND have felt that losing their voice was the biggest loss. It did come as a surprise because I felt that perhaps losing ones mobility or being unable to breathe properly would be more devastating, but it seemed to be something which is very closely tied up with ones sense of identity.”
She explains why recording Laurence’s voice matters so much to the family: “Laurence used to play and sing in a band, so his voice is important to him and I cannot imagine not having his voice around and I would certainly like Stan to know the timbre of Laurence’s voice in some form. I don’t know what kind of quality we’re going to end up with this product but it’s a try, it’s doing something positive and being proactive and just allowing Stan to have that part of his father even after he’s gone.”
Laurence’s story is told on BBC Inside Out North West, BBC One, Monday, March 7th at 7.30pm.
Viewers outside the North West can view the programme on digital channel 978 or at www.bbc.co.uk/iplayer