SEVEN-YEAR-OLD Louie Gorman suffers from a chromosome deletion disorder which affects only eight people in the world.

His is believed to be the only case in the UK.

The Vigo youngster cannot walk, talk or feed himself with a knife and fork.

His development and motor skills are impaired and if he falls he cannot even put his hands out to protect himself.

Aged two, he had major corrective surgery on his hip which left him in plaster for six months.

Next month he will undergo a similar procedure on the other side as well as measures to prevent his knees from dislocating.

A secondary problem Periventricular Leukomalacia - like holes in the brain - complicates his condition.

Despite his disabilities, dad Brian said Louie is "extremely happy".

He said: "He very rarely cries. He is always smiling. Everybody who meets him loves him."

Louie loves jaffa cakes and watching TV. His favourite is Spongebob Squarepants.

Brian, a Bexleyheath fireman, said: "He loves TV. He has not got a lot else going for him in his life so we are happy to let him do what he wants."

Brian, 50, said the family - which also comprises mum Theresa , brother Jacob, nine, and daughter Tilly, five - had to move house to cater for Louie’s needs, including installing a lift and tracks around the house.

Brian said: "Because he was born with it, we have developed with it.

"They say if one person in the family is disabled, it disables the whole family."

Normal arrangements are difficult. For his 50th birthday party, Brian hired an entire restaurant. Louie sat happily in the corner watching a portable TV.

Brian said: "We cannot book a table at a restaurant with friends because we can’t take Louie with us."

He said that people stare when they take Louie out and that he often makes loud noises which people find unusual.

The family had been helped by a number of fundraisers, including businesses such as Vigo graphic designers Fusional and Strood firm Alltask.

Last year, Maidstone Grammar School raised £1,000, while an annual dinner and dance has been held at Brands Hatch for the last four years.

Fellow Bexleyheath fireman Glen Coleman is all set to run this year’s London Marathon.

Brian said: "At the moment, Louie is pretty well catered for.

"He will have a normal lifespan. It could be 40 or 80 - all we know is he’s probably going to outlive us.

"We are trying to get some money together to put aside so if he ultimately has to go into a home his brother and sister can pay for it.

"Or if he needs something, they want to take him out or need to adapt their houses for him, it would be paid for."

On May 28, Andy Simpson, 47, Dave Hawkes, 45, Mark Tickner, 49, and Louie’s uncle Glyn Bowyer, 50, hope to raise £10,000 by cycling 1,100 miles from London to Madrid.

Sidcup firefighter Andy said: "One day we are cycling 140 miles, another we are going 80 miles up the Pyrenees.

"It’s going to be tough. You cannot train for that. Not in Kent, anyway."

Two years ago Dave and Glyn raised £5,000 by cycling from Land’s End to John O’Groats.

Visit louieseuropeantour.co.uk