Four-year-old Kaylee Tugby suffers from a rare form of a muscle-wasting disease, but people in Alderney have been raising money to send her to America to see a specialist and to buy a state-of-the-art wheelchair. (0915968)

GENEROUS people in Alderney are raising money to help send a brave four-year-old girl to America for treatment for an extremely rare condition.

Kaylee Huddart Tugby is one of only four people in the world known to suffer from an unusual type of myopathy – a muscle wasting disease caused by the dysfunction of muscle fibre. She is also the only known child to have the illness.

Kaylee’s condition has deteriorated significantly in the last nine months – to the point where she is no longer able to walk.

Her family and friends are desperate to send her to see an expert in Philadelphia and buy a state-of-the-art wheelchair. They have been selling green ribbons in island shops for the cause.

Mum Wendy Tugby said dealing with Kaylee’s illness was a struggle, mainly because so little was known about her daughter’s condition.

‘There are good days and bad days,’ said Miss Tugby. ‘There are days when you feel you can cope and others when you can’t. It is a struggle and the hardest things are not knowing how long and how quickly it will progress. It really is a waiting game.’

Kaylee, who attends St Anne’s School and has her own personal teacher, is so weak that she is unable to turn over in bed. She also has to be fed through a nose tube.

• Anyone who would like to make a donation in aid of Kaylee should email helpkaylee@hotmail.co.uk.
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