Kaylee Huddart Tugby, who has a severe and rare muscular disease.

GOLFERS in Alderney have raised more than £1,000 for myopathy sufferer Kaylee Huddart Tugby.

The cash will help little Kaylee, five, battle the muscle tissue disease.

‘Kaylee is going to need support for the rest of her life. We are just so grateful for everything that people have been doing for us, from fund-raising to encouragement and general support,’ said mum Wendy Tugby.

‘Special thanks to James Maxwell and the other golfers for the latest donation. I’d also like to thank people who have made anonymous donations into Kaylee’sbank account.’

Islanders have been raising cash to send Kaylee to see a myopathy expert in the US state of Philadelphia and buy her a state-of-the-art wheelchair. Green ribbons have been sold in numerous shops, while various charity events have been organised. The biggest saw firefighters don full kit and walk round the island.

More than £12,000 has been raised so far, but the trip to Philadelphia has yet to be organised.

‘The visit to America is turning out to be a long process,’ said Wendy. ‘The bureaucracy is the prohibitive thing at the moment. We have sent a DVD of Kaylee to demonstrate how she is physically and hope to hear something soon.’

Despite the issues involved in getting to Philadelphia, Kaylee does have one American trip to look forward to thanks to the Make-A-Wish Foundation – a charity which grants the wishes of children aged three to 17 who suffer from life-threatening illnesses.

‘We are really looking forward to the holiday in November,’ said Wendy. ‘We are very lucky the Make-A-Wish Foundation is paying for us to go to Disneyland in Florida. Kaylee is very excited and can’t wait to meet Cinderella and be dressed up as a princess.’

Kaylee, who attends St Anne’s School and has her own teacher, recently underwent an operation to lengthen the tendons in both her legs.

‘The operation was done in the hope that her feet will flatten so she can stand with her standing frame and hopefully take a few steps.

‘After the casts are taken off, Kaylee will need physiotherapy to build the muscles in her leg back up so we can establish whether she’ll be able to stand and walk on her own again.’

Kaylee’s condition first became apparent when she was two. The illness has left her so weak she is unable to turn over in bed, while she has to be fed through a tube in her navel.

Wendy said dealing with the illness was a struggle – mainly because so little is known about her daughter’s condition.

‘There are good days and bad days. 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.’

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

PIC [search all baskets - needs a crop]

Little Alderney girl Kaylee Huddart Tugby, who suffers from myopathy, is going to Disneyland in Florida thanks to the Make-A-Wish Foundation. (1036016)