My Child Can’t Stop Eating
Prader Willi Syndrome
PWS
Rebecca Medley is 11 years old, and already she weighs 11 stone. She was born with a genetic disorder called Prader Willi Syndrome or PWS. This is caused by the deletion or damage to chromosome 15. The effects are physical, mental, emotional, and incurable.
Rebecca Medley
Rebecca’s brain never signals when she is replete, sated, full-up, so she is constantly hungry. This leads to an obsession with food and a permanent food-craving. She will eat anything, steal from other’s plates, eat from the dustbins, even, on one occassion, ate the cat’s excrement.
Prader-Willi Syndrome also causes a wide range of learning difficulties, Rebecca gets special needs support at her local primary school. PWS will affect Rebecca’s social development, sexual development, and mental development.
About 2,000 people in Britain have Prader-Willi Syndrome. There is no cure but, with careful management, can it be controlled?
At 18st Katie Williams has fought the disorder for all of her 23 years. Her father, Tony Williams, says: "When she was born we were told she would be dead by the time she was in her late teens or early twenties, having eaten herself to death".
It’s a cruel twist of PWS that Katie only needs half of the calories required by the average woman. This is because her poor muscle tone doesn’t burn calories as fast as normal. Her daily limit is just 900 calories.
Katie Williams
Katie lives in the flat above her father’s pub, giving her a fair amount of independence. Many individuals with Prader Willi Syndrome need to be watched at all times to ensure they are not eating. Katie is allowed a lot of freedom by her father, but he will count the calories she is eating and count the money she has for shopping and check carefully what she has purchased.
Katie keeps hunger pangs at bay with low-calorie lunches and heaps of fresh vegetable for her evening meal.
Katie says: "My ambition is to be the first woman with PWS to live on her own and have family and children". Will Katie ever realise her dream? And why? despite her Dad’s best efforts is Katie still piling on the pounds?
Katie sleeps wearing an oxygen mask, as her weight is causing her breathing difficulties. Before Katie can have her 125 calorie breakfast she must be weighed. Katie has put on 3st in 10 months. Katie is fortunate, she is one of the few people with PWS to have a full-time job. She is a cleaner at a local special needs school and this keeps her occupied and keeps her mind away from thoughts of food.
Despite Katie’s best efforts, she cannot resist the lure of the staff canteen and she supplements her low-calorie lunch with a wafer biscuit. It is cheating like this that is making her weight creep up and alerting her father to take action.
If Katie finds it so difficult to control her weight when so much of her life is controlled, what hope is there for someone with PWS with no control at all.
