A Bridlington-born man is appealing for the public’s help in preserving his voice so his family can hear him after he loses his ability to talk.
Dad-of-two Jason Liversidge was diagnosed with motor neurone disease in August 2013 and the muscle wasting condition will soon mean he will be unable to speak.
The 39-year-old has lived in Scarborough and now lives in Rise, near Skirlaugh, with his wife Elizabeth, 43, and daughters Lilly, 4, and Poppy, 2.
Jason and his family are appealing for the men of the area who will have a similar accent to himself to come forward and help record their voice to “keep his identity” in Edinburgh.
The former social worker said: “The kids can’t really understand why I’m losing my voice or struggling to walk. I want to be able to preserve my voice though so they can continue to hear me. I want to spend as much time with my family as I can. I am not letting the diseases get the better of me. I’m determined to do as much as I can, while I can. It would mean so much to me if people can find it in their hearts to help us.”
His wife Elizabeth spotted a tweet from an Edinburgh clinic and the family travelled up in June of this year so Jason could record 400 sentences which can be broken down into soundbites. He now hopes to combine his with donor voices to create a bank of sounds of words.
He is now appealing for 20-25 volunteers from the area to help record voice clips in the new year at a clinic in Edinburgh for up to a two hour period.
When his voice deteriorates, he will be able to use a speciailised Tobbii computer which can be controlled by his eye movements so he can continue to talk to people.
MND is a rare, rapidly progressive illness that affects two in 100,000 people in the UK every year. It damages the nervous system leading to weakness, muscle wasting, severe disability and death. The victim is unable to move, speak, swallow and eventually unable to breath.
Jason is suffering from the effects of the disease with his voice now slurring as well as his arms and legs becoming weaker meaning day-to-day activities are proving difficult.
He also has the Fabry disease which is a rare genetic disorder and it is believed Jason is the only person in the world to be diagnosed with both motor neuron disease and Fabry disease.
His wife Elizabeth said: “Emotionally it has been really hard. We were completely blown away by it and I cried for the whole of the following three days. It is so unfortunate.
“It is hard to see what Jason is going through. He was such an active person when he was motorbiking, skiing and going to the gym but now he has had to give it all up and now he needs assistance with eating and getting dressed.”
They have also created a gofundme page so that Jason and his family can spend doing as many things as possible in the small time frame they have left. So far they have raised almost £13,000 which has enabled the family to go to Disneyland and Universal Studios in Florida for three weeks and the family are set to travel to Lapland later this month for a few days to meet Santa while also celebrating Jason’s 40th birthday.
The couple had their home adapted for Jason in November 2014 when BBC Show DIY SOS called following a nomination from a friend to go on the show.
Following the airing of the programme, they received a handwritten letter from Prince William who was moved by their story.
Elizabeth said: “It was fantastic for William to get in touch and we’re so grateful for everyone’s help in making sure we spend our remaining time together so happy.
“It would mean so much to us as a family to hear Jason’s voice in the future. I know it is a big ask for people in the area to travel up to Edinburgh to help but it really would mean the world to us and especially our daughters. It is a hard concept to think about Jason not being around to see Lilly and Poppy grow up so we want the best while he is still here.”
Anyone who feels they can help the family are asked to contact Jason directly by emailing firstname.lastname@example.org.