Online campaign aims to raise £80,000 for specialist equipment and resources for Melton man suffering from rare neurological illness

Melton man and ex-serviceman Thomas Agnew (61) with Andy J Spiers, of the charity Once We Were Soldiers EMN-150917-132920001
Melton man and ex-serviceman Thomas Agnew (61) with Andy J Spiers, of the charity Once We Were Soldiers EMN-150917-132920001
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An online campaign has been launched to raise £80,000 to buy specialist equipment and resources which would improve the quality of life of a Melton man and ex-serviceman suffering from a very rare neurological illness.

Thomas Agnew (61), of Tamar Road, was diagnosed with Locked-In Syndrome in 2013.

Sufferers are aware and awake but cannot move or communicate verbally due to complete or near complete paralysis of the muscles in the body, except for the eyes.

At some point in his life Thomas, who is bed-bound due to his condition, will become ‘permanently locked’.

Previously speaking to the Melton Times Thomas said: “Attacks can come on at any time and can last up to six hours. The longest episode I’ve had in lock-in is five days.

“When I was admitted to hospital in May this year I had an episode where I became totally unresponsive and died and had to be resuscitated by the doctors and on-call staff.”

His son, Jamie, has now set up a JustGiving fundraising page appealing for donations for a full round the room hoist to be fitted in his father’s house and towards garden improvements.

Jamie said: “I want to help my father get the much needed equipment for use in an extension that they can’t afford. He has applied for funding from various sources but has had no replies or been told that he does not qualify.

“We’re receiving no responses about funding from charities. I’m taking it upon myself to raise the money and taking the project of getting an around the room hoist for him on myself.

“To help fund this project would give him the quality of life he deserves and also the much needed privacy and cleanliness needed to prevent the onset of any infections which he is prone to.

“I’ve seen my father suffer long enough in a mobile hoist being swung around like meat. The round the room hoist system is an unknown cost but would be substantial and out of financial reach.”

Earlier this year grandfather-of-three Thomas was granted planning permission to build a side extension to his home, something he still desperately needs as he says he ‘can’t bear living downstairs anymore’ without it.

Access to his house also needs major improvement as there’s no wheelchair access apart from a ramp.

A bid for funding towards the extension remains in the hands of the Royal British Legion head office in London, with a decision still awaited.

Applications have also been submitted to the BBC programme DIY SOS in a bid to get some help with Thomas’ much-needed extension.

Jamie added: “The estimated cost of the extension is currently unknown. With an extension and specialist equipment, needed to enable his wife and carers to carry out his required level of care, my father’s quality of life would be improved 10 fold compared to what it is at present.”

At the age of 17 Thomas joined the Royal Artillery and later served in Northern Ireland for four years as a dog handler.

Thomas, who also served at Melton’s Defence Animal Centre and earned three medals during his years of service, came out of the Army in November 1987.

As reported in the Melton Times last month, members of the Armed Forces community from across Leicestershire and beyond came together to help tidy up his garden for him following a Facebook appeal.

After hearing of Thomas’ plight the Veterans’ Association got in touch with Leicestershire-based charity Once We Were Soldiers (OWWS), which provides support for former serving members of the British Armed Forces.

Andy J Spiers, who is involved with the charity, issued an appeal on Facebook to get help for Thomas. Among those to respond to his call to action was Old Dalby man Carl Pheasant, who is involved with the UK-based motorcycle charity the Armed Forces Bikers (AFB), which aims to assist former serving members of the Armed Forces in charitable need.

Carl helped get the ball rolling by appealing for volunteers to get together to work on Thomas’ garden. As a result about 15 people, from different parts of the country, rolled up their sleeves and got stuck into various tasks over a period of about five hours.

l Anyone who would like to make a donation towards getting Thomas the specialist equipment and other improvements he needs can make a pledge by visiting