WHEN Louise Newham was only three months old her parents instinctively knew something was wrong.

She had been tube-fed at birth but developed no interest in food in the months after.

Poor muscle strength meant she could not suck milk from a bottle and she would turn away from food.

When parents Gwen and Neville asked doctors for advice they were met with a standard response. Louise, now 18, was described as a slow developer who had a bad start in life.

Helpless and confused, her parents spent hours trying to coax Louise to eat just one spoonful.

Gwen, who lives with Neville and Louise at Ranmore Close, St Leonards, said: "I felt as though my whole life was one long feeding time. It was exhausting and we had no idea why our baby was never hungry. She was terribly thin but would never cry. She would lie silent and still until one of us picked her up."

Louise did not walk until she was two. Although her parents were delighted to witness her first steps, their joy turned to anguish as they discovered their daughter was rapidly losing weight.

During her first days at playschool it became clear that Louise was different from the other children.

She was very inactive and would sit staring into space for hours unless she was given a task to perform. A speech therapist was employed to help Louise learn to talk and she was given one-to-one support.

Neville said: "Louise did not mature emotionally so we took her to visit a development officer at the playgroup. We were told she was mentally handicapped and given advice about allowances we were eligible for."

As Louise approached her fourth birthday she suddenly changed from a food-shy toddler to a constantly hungry and aggressive child. These symptoms indicated Louise may have been suffering from a rare disorder called Prader-Willi syndrome which is associated with uncontrollable appetite, tantrums and weak muscles.

Gwen said: "After her normal meals she would still want more and more. We could hardly believe it, but our once thin daughter just ballooned in size. All she ever wanted to do was eat."

Normally, the feeling of fullness after eating comes from a complex mechanism of chemical messengers travelling between the gut and brain. Prader-Willi sufferers do not receive those messages and can only feel full when there is literally no more room.

Louise's constant craving for food was coupled with an ultra-slow metabolic rate which meant she burnt up calories about four times more slowly than normal.

Weak muscles made it hard for Louise to run and play like other children and she had to wear orthopaedic boots. Her movements were limited and she often sat at home in a trance-like state.

Gwen said: "We consulted a dietitian who devised a calorie-controlled diet for Louise. If she put weight on it was very hard to get it off so we had to be very strict about food."

The kitchen was a no-go area for Louise and her mum was forced to monitor her activities 24 hours a day. Gwen said: "I'm still like Inspector Clouseau in the kitchen. I know if anything has been moved or is missing."

As Louise grew older, Gwen and Neville were faced with aggressive tantrums and obsessive behaviour when her access to food was denied.

Neville said: "She would see an advert on television for a chocolate bar or ice cream and she would crave it. If we tried to stop her she would get angry and her mood would darken."

She also hated crowds and queues and would react violently to them.

Neville said: "It had a massive effect on our lives. We don't go to social events any more, or any function where there is food.

"Louise's syndrome has been extremely restrictive on our lives. We would have liked more support from social services but we're constantly told there is not enough funding."

At 18, Louise still cannot read or write. Signs around the house remind her to do basic things like go to the toilet.Her parents' vigilance has helped keep her weight down to ten stone, though at 5ft that is still overweight.

Louise now studies two days a week at Rose Cottage, the further education unit of Glyne Gap School in Bexhill.

She is taught how to visit a shop and prepare for a meal, she is taken swimming, to the gym and to Tai Chi classes. She also attends tutorials on social skills and mobility.

Gwen said: "Louise has told us she would like to move into a home with appropriate care but places are very limited. She would need constant support or the consequence would be an early, horrible death."

Last year Christina Corrigan, from California, hit the headlines when she died from a heart attack at the age of 13, weighing more than 48 stone..

Gwen said: "If Louise lives away from home she will need a lot of support and care.

"Someone will have to be with her making sure she does not spend her weekly allowance on food.

"Shops selling food are everywhere and the temptation would be as strong as an alcoholic in a pub.

"If Louise has money she will use it to buy as much food as she can and she won't stop eating until the money runs out or someone stops her food-seeking.

"Louise is a loving daughter who hates being alone. She enjoys company and friendship and that is what she deserves."

PWS remains a mystery to many doctors. Gwen said: "Louise was finally correctly diagnosed with PWS when she was 14 and I know of one man who wasn't diagnosed until he was 40.

"Many people are living with PWS but do not even know it. I would urge anyone to get in touch with the association and learn more."

The Prader-Willi Syndrome Association (UK) can be contacted at 2, Wheatsheaf Close, Horsell, Woking, Surrey, GU21 4BP, telephone 01483 724784.

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