EVERY five hours a girl is born with a severe neurological disorder called Rett syndrome.

The condition leaves sufferers severely disabled both physically and mentally and father-of-two Bob Sykes has watched his daughter live with the syndrome.

Claire, 19, showed no sign of any illness at birth, but now she is unable to do anything by herself.

Mr Sykes said: “Sometimes you can detect the condition at birth.

“But Claire had a regression and lost skills. She used to be able to feed herself, but now she can’t. She needs to be fed, washed and dressed, but she can walk a bit.”

Rett syndrome often sees girls make normal progress up until they are a year old, then after a period of no change they begin to start losing speech and hand movement.

Claire is one of only 50 per cent of Rett syndrome sufferers who are able to walk and more than half suffer from some form of epileptic seizure.

Mr Sykes, from Tendring, added: “Emotionally, her development is almost normal, but her cognitive development seriously affected – she has the mental age of a one-year-old.

“It mainly affects girls but some boys have been diagnosed in this country.”

Mr Sykes, 53, has played a big part in raising £20,000 for Rett UK, which hopes to increase medical research into the disorder and one day find a cure.

He was one of more than 50 cyclists who pedalled 157 miles from the charity headquarters in England to the charity’s headquarters in the Netherlands last weekend.

Mr Sykes said he decided to organise a bike ride to raise money after completing a shorter charity cycle ride two years ago.

A total of 20 cyclists completed the route from Luton on Saturday morning to Harwich in one day, crossing the ferry, and then cycling to Utrecht in the Netherlands. Others competed only one leg of the journey.

He added: “The whole event was marvellous. It went absolutely to plan. The weather was great and everyone felt great for the fun they had and what they had achieved.”