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Tragedy of the little boy who knows no fear.

Little Joseph Daly needs round-the-clock care because of a rare disorder which means he knows no fear.

Joseph, aged four, is constantly covered in bruises and has to wear a special padded helmet to protect him from bumps and scrapes.

The youngster suffers from Lennox Gastaut Syndrome, a rare form of epilepsy which affects only about 400 people in Britain. The disorder causes fits and behavioural problems.

Joseph's father Kevin told yesterday of the family's ordeal trying to stop him harming himself.

Mr Daly, aged 31, who gave up a career in the Navy to help care for his son, said: "It is a constant job watching out for him because he could hurt himself at any time.

"If social services came to the house and saw the bruises on his body they would take him away from us if they didn't know about the condition. We just can't stop him hurting himself.

"Joseph does not understand danger and is at constant risk of harming himself. He will do things like run the length of the lounge into a brick wall or shut his fingers in the door.

"He has also broken his toe jumping from the table and cut his head front and back. There was a time when we were frequent visitors to the local casualty department with him.

"Joseph has no fear for himself or for others and he wears a padded helmet most of the time to protect his head.

"It is very hard because we never know when he is going to do something. We've put safety gates around the stairs and locks on the kitchen door to try to stop him doing things like touching the cooker but it is difficult."

Mr Daly said Joseph developed the syndrome, which is not hereditary, when he was eight months old.

He added: "Lennox Gastaut Syndrome is drug resistant which means you can be treated with one drug for say four months but then you have to try a different one.

"Joseph can have up to 45 fits each day and we have been told he has the educational age of an 11-month-old boy. He should be learning to talk but he communicates by screaming."

Mr Daly and his wife Annette, of Lockleaze, Bristol, have launched an appeal fund in a bid to build a special padded room for their son to play without hurting himself.

The couple have two other children, Sarah, aged six, and Aidan, aged seven. Neither suffers from the syndrome.

Mr Daly added: "We want to build an extension to the house with padded walls and padded floor so we can let Joseph play and not have to worry about him doing something to himself.

"At the moment we have to manipulate our lives completely around him. Sarah and Aidan must be the only children of their age I know of who can put a body in the recovery position because they have been taught what to do to Joseph when he has a fit.

"They are very understanding and want to help their little brother but Joseph often just wants to be left alone and that can upset them."

Mrs Daly, aged 31, said: "Unlike other children who can fall off a climbing frame and learn from their experience, Joe will keep going back for more - it's a nightmare really."

Dr Peta Sharples, who treats Joseph at the Bristol Children's Hospital, said: "Lennox Gastaut Syndrome is a serious type of epilepsy which is very difficult to treat.

"Play for young children is the main way they can learn but often they don't have the normal opportunities to play because it is dangerous.

"Having somewhere where he can play safely could be of great benefit to Joseph."

l Money to help the family can be paid into the Joseph Daly Fund at any branch of Lloyds Bank.
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Author:Brownhill, Mike
Publication:The Birmingham Post (England)
Date:Jul 18, 1998
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