READERS of the Chronicle are being asked to help Crewe baby Jamie Hopley, who is one of only four people in the UK ever to suffer from a disfiguring rare genetic disease.

The nine-month-old has Antley-Bixler Syndrome, which causes skeletal mutations, and needs round-the-clock care.

The disease means that Jamie's bones were not fully formed during his mother's pregnancy, causing skeletal, respiratory and mobility problems.

He will have to have his left foot amputated in November to have any chance of walking in the future.

His parents Kenny Hopley and Natalie Fox, both 19, are desperately collecting money to pay for the expensive equipment that Jamie needs to live as normal a life as possible.

Their latest effort was a bungee jump at the Durham Heifer pub in Broxton. Kenny leapt from a 200ft crane, raising more than £1,200 through sponsorship.

Jamie has spent most of his life at Alder Hey Children's Hospital in Liverpool, and has had to endure numerous operations to correct his condition.

A tracheostomy, in which a tube is inserted directly into the wind-pipe, needed to be performed to help him breathe.

Kenny, who works at Bentley Motor Cars in Crewe and lives in Broom Street, said: 'Jamie has been home for seven weeks now, and we are all amazed at his progress.

'But, because of his problems, we need an awful lot of expensive equipment to move him around and to help him interact with other people.'

Jamie is unable to feed properly and has had to have a gastrostomy to enable him to be fed directly into his stomach.

He has only one elbow as the bones in his right arm are fused together and is unable to use it as well as his left.

His parents and friends are planning the next fundraising event, which will be held over two days at the Nags Head in Market Street, Crewe.

Asda and the Caudwell Group have donated items for a Dutch auction - where the price is slowly lowered and the item is sold to the first bidder. It will begin at 7.30pm on Friday, July 30.

The following Saturday there will be a fun day from 11am-11pm and two members of Jamie's family will be shaving their heads in return for sponsorship money. There will also be a raffle, a tombola and a bouncy castle.

Kenny added: 'Natalie and I are forever grateful to our families for the support we have received from them in caring for Jamie. They have been fantastic.'

If you would like to make a donation or organise a fundraising event to help Jamie Hopley, you can call the Chronicle on 01270 255733, fax us at 01270 256760 or e-mail