Only three years ago Linda Bowes was a healthy young woman leading a busy life as a mobile hairdresser working all round the York area.

Linda Bowes, who suffers from a wasting disease, with her father, John Bowes, and fundraiser Janice Harris

But she has since been struck down by a devastating rare illness, leaving her in a wheelchair and unable to communicate except through a machine called a Lightwriter.

Now that lifeline may be taken away, as the York Health Trust needs its only Lightwriter for other patients.

Though Linda knew her use of the machine - on which she can tap out words with one finger which are spoken by an electronic voice - was temporary it has made such a difference to her she is desperate to find a replacement.

She says she is "devastated" at losing it, adding: "It's my only means of communicating."

Colin Watts, general manager at York District Hospital, says the Lightwriter was provided to assess whether it could help her, but it was made clear it would have to be returned and Linda would need to seek a replacement.

But local people are rallying round, and one friend hopes their support will be sufficient to meet the machine's £2,000 cost and provide other help to maintain Linda's quality of life.

Linda, who is 30 and living with her parents, John and Christine, in Usher Lane, Haxby, York, suffers dystonia, a rare and complex condition.

In her case it has caused involuntary muscle spasms affecting her whole body. Before one bout of surgery her body was twisted at such an angle that she had to rest her head permanently on cushions.

It all started in 1997 after she had a growth removed from her neck, though John says the exact cause of dystonia is not known so its onset cannot be traced to either the growth or the subsequent surgery.

"I had a hectic life until this happened," says Linda.

Not only that, John points out that her weight has occasionally fallen dangerously due to the energy used up by spasms.

She needs 3,000 calories a day, 1,500 of them at night. Most of her food has to be taken through a nasal drip, as slowly as possible so it provides maximum nourishment.

She needs constant medication to ease her pain, and injections to reduce the spasms. There is no cure, though John says they keep hoping, adding the worst prospect is her diaphragm going into full spasm, stopping her breathing.

Janice Harris has organised a jumble sale, tombola and raffle at Haxby Working Men's Club at 1pm on Saturday, February 12, with an initial aim of raising the cash needed for the Lightwriter.

She has already received cash and prizes for the event, and hopes to create a fund for Linda's future needs.

Janice visited Linda when she first became ill. "Every time I went to see her I just admired her so much for her strength and her courage," she said.

John said a care package had been agreed which would allow Linda to return to her own bungalow in Huntington, though it needed major alterations.

Anyone who wants to help Linda should contact Janice on 0961 868171.

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