Plucky Jordan Young is a 'Butterfly Child' or, more officially, a sufferer of epidermolysis bullosa, a genetic disorder that causes skin to blister and shear at the gentlest touch.

To protect his butterfly-wing skin, the six-year-old has to be wrapped from his neck to his toes in three thick layers of bandages.

But even this does not ease his constant discomfort and each day Jordan takes a concoction of up to 21 different medicines to keep the pain and complications at bay.

He is fed through a gastric tube as even the act of swallowing causes his throat to blister and bleed, said his mum Fiona, who recently moved to Conniburrow from a remote area of Scotland with her husband and Jordan's two older brothers.

"We moved here to be nearer to Great Ormond Street Hospital. Because Jordan needs so much treatment, we were constantly flying backwards and forwards.

"It was exhausting and, at £700 a flight, extremely expensive.

"We don't know anyone in Milton Keynes yet and sometimes, when we're out, people stare at Jordan wrapped in his bandages in his wheelchair.

You can hear them thinking: 'That poor child. Whatever is wrong with him?'"

In fact, Jordan is a normal, cheeky little boy who loves playing on his PlayStation and performing stunts with his toy cars.

Though he uses a wheelchair for long distances, he plays in the park and kicks a football around with his brothers (except he uses a balloon, which is softer against his skin).

Recently he had several operations to straighten his hand
because his fingers had curled into a fist and fused to his palm.

Now, for the first time, he is able to hold a pencil and learn to write.

He has started at Springfield's Shepherdswell School, where an assistant helps with his care and teachers place a special fan on his desk to keep him cool.

"A big problem is that he constantly feels so hot because of all the bandages. But he doesn't complain – he just gets on with life," said

Fiona, who has always cared full time for Jordan herself.

Just giving him a bath can take two and a half hours – half an hour for the necessary sedative and painkillers to work, an hour to soak and cut the old dressings off, and another hour to wrap him in fresh bandages.

Next month, Jordan and Fiona's story will be told on a special 'Little Heroes' edition of the Jeremy Kyle show, to be screened on Wednesday October 10 at 9.25am.

Fiona said: "We were pleased to take part because we want to raise awareness of EB and raise money for the charity DebRA so eventually a cure can be found."

* The EB research and patient support charity DebRA can be contacted on 01344 771961 or via www.debra.org.uk.