By Angela Warhurst IF you've heard of Prader Willi Syndrome the chances are you'll know it as the medical condition where those who suffer from it can literally eat themselves to death.

Prader Willi Syndrome is a complex medical condition which affects boys and girls from the moment they are born and continues to affect them throughout their lives.

By far the most headline grabbing aspect of the condition is the absolute compulsion from an early age - usually about two - to eat and eat and eat and eat.

In the most extreme cases, those with PWS eat not just food but wallpaper, cardboard and other everyday materials.

Yet coupled with this is poor muscle tone, learning difficulties varying from mild to severe, a lack of normal sexual development and short stature.

Because of the compulsion to eat and the strain the excess weight puts on the heart, those with PWS tend to have a life expectancy of just 20 years.

Yet for Bolton mother Helena Lowe, whose daughter Jennifer has PWS, she is hopeful her own daughter will see well beyond this threshold.

And indeed now aged 23 and living away from home under the care of a highly specialised team in Northamptonshire, Jennifer is testament to her parents' care and attentiveness.

Helena was first alerted to her daughter's condition within hours of her birth, yet she only secured a diagnosis when she reached the age of 12.

Jennifer was a floppy baby who was difficult to feed and indeed had to be tube fed.

In many other ways her daughter was slow to develop. Crawling, sitting up and walking all seemed to take longer.

Between the ages of two to four the obsession with food kicked in and Helena literally had to have eyes in the back of her head to curb her daughter's compulsion.

It is testament to Helena's careful monitoring of Jennifer that, at the age of 16 as she prepared to go on to higher education, she weighed just seven stone 10lbs.

Because Jennifer was not getting the supervision she needed the weight started to pile on, but six months ago she secured a place an a specialist facility in Northamptonshire and already the weight is starting to come off.

Now Helena is keen to spread the message of PWS throughout the community at large and pass on the good work of the Prader Willi Syndrome Association, which she has been a member of for the past 10 years. The organisation, based in Surrey, offers support, help and understanding to those affected with PWS and their families.

"We joined the association as soon as we had a confirmed diagnosis and purely from the point of view that it eased our feelings of isolation and made us realise there were more out there in the same position. That helped," explained Helena.

"The diagnosis also helped a great deal. It was no longer a case of feeling you had a naughty child and you yourself could be to blame.

"Actually knowing it was something helped a great deal."

Because parents of children with PWS have to dedicate so much of their time and energies on to their child, the Association is holding its first ever Awareness Event from April 25 to May 3, an eight day period in which the Association will be working to raise awareness and understanding. During the week, a number of sponsored "Walk Alongs" will be held to symbolise the fact that people with PWS need advocates to "walk along" with them through life to help them keep a balance in their weight, their emotions and their interactions with other people.

Helena herself is planning to walk from the family home in Bradshaw to the Reebok Stadium on Saturday, May 1, to raise cash for the Association.

As an avid Bolton Wanderers fan, Helena will be going to see Wanderers play Wolves after completing the five to six mile walk.

As for the awareness event itself, why eight days?

"Because caring for someone with PWS is more than a full-time job, it's a long term commitment of patience, sacrifice and unending awareness which can reap very rich rewards-with the right support," said a spokesman for the Association.

"People with PWS are happy, cheerful, friendly, caring people who have a lot to offer the world."

The PWSA UK can be contacted at 2 Wheatsheaf Close, Horsell, Woking, Surrey. GU21 4BP.

For further information about PWS and the PWSA UK, tel or fax 01483 724784.

If you would like to sponsor Helena's walk on May 1 she can be contacted locally on Bolton 594745.

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