LITTLE Lucy Burke smiles, crawls and interacts with everyone around her. She reaches out for things and loves anything which she can crumple.

But 15-month-old Lucy, of Laverstock, will always look different from other children because she was born with the sections of her skull already fused together.

Her condition is called Crouzon's syndrome, a rare, genetic disorder.

Lucy's parents, Hayley and Dave, emphasise that, apart from her appearance, she is perfectly normal and can expect a normal life span. They want to raise awareness of Crouzon's.

Dave, a lorry driver, said: "We think it's important that people realise that Lucy is as bright and lively as her brother and sister.

"A mate at work asked me whether she would have to go to a special school - she won't.

"She'll go to St Andrew's Primary School, like her brother and sister."

Hayley and Dave say there is still a lot of research to be done and they hope people will want to support Headlines, the national charity which supports people with conditions like Lucy's.

Four-year-old James and Sophie (two) adore their baby sister, although their mother is conscious of how much extra time she has to spend caring for Lucy.

Lucy still has to be fed through a stomach tube, has a tube up her nose to help her breathe, and she must be carefully monitored.

She was born four weeks early at Salisbury District Hospital in February, 2001.

At birth, her head was an unusual shape and her eyes were prominent because the eye sockets had not been able to grow fully.

X-rays showed that the bones of her skull had fused together in the womb.

Normally, they don't join until a child is much older, to allow for the rapid growth of the brain during the first years of life. Six weeks of agonising uncertainty passed before her parents were told by a genetics specialist at Southampton that Lucy had Crouzon's syndrome.

It was a great relief to be referred to Great Ormond Street Hospital, London. "At least people knew what they were talking about and were able to answer all our questions," said Hayley.

Because of compression within her skull, Lucy still can't breathe easily and has problems feeding, but a shunt has been inserted to help relieve the pressure and, some time within the next three months, she will have major surgery on her skull.

Her parents must also try and get her to eat solids after so much time being fed through the stomach tube.

Later, Lucy will also need help from an audiologist, ophthalmologist, speech therapist, neurologist, plastic surgeon and an ear, nose and throat specialist. But once Lucy starts school, she will have James and Sophie on hand to smooth the way for her.

To find out more about Crouzon's syndrome, and similar conditions, contact www.headlines.org.uk or the chairman on 01926 334629.