The girl that sweets could kill

Published on Thursday 25 February 2010 21:45

IT MIGHT come as a blessing for some parents and a nightmare for others – having to ban your child from junk food to prevent them eating themselves to death.

But it is a fact of life for Alan and Elaine Auld, who have been forced to place their daughter Iona on a strict fruit and vegetables-based diet to help keep her alive.

The 22-month-old suffers from a rare illness which has given her an insatiable appetite.

Her parents fear if she got a taste for sweets and other unhealthy snacks she would become hooked and be unable to stop gorging.

Iona, from Troon in Ayrshire, has Prader-Willi Syndrome, an incurable genetic condition whose main symptoms include always feeling hungry.

The illness affects only about 90 people in Scotland. Sufferers typically have low muscle tone and learning difficulties and face a long battle with obesity.

Iona's diet needs to be tightly controlled, but sufferers will go to extreme lengths to get their hands on food.

Mrs Auld said they were being cruel to be kind in the hope that Iona would develop eating habits to last a lifetime.

She said: "It's strange because you have to go against your instinct to offer her a treat.

"But Iona will eat any food. There's nothing she doesn't like the taste of," said Mrs Auld. "With her, it's worse than someone who's obese, because she will just keep eating.

"The first taste is as good as the last."

Iona was originally diagnosed with cerebral palsy, until a specialist realised the symptoms did not make sense.

The news came as a huge shock to her parents.

The couple now ensure that Iona eats only the healthiest of foods, and, unlike other children, she never complains about eating fruit and vegetables. Mr Auld said: "She has never had any chocolate or biscuits, and we will avoid giving them to her at all costs.

"She's more than happy with fruit. We give her breadsticks instead of biscuits and put some fruit in natural yoghurt, which she loves."

The Aulds said that Iona's brother, Cameron, nine, knew not to eat sweets in front of her.

Friends and family have also been told about the dangers of potential treats.

When she starts attending her friends' birthday parties, Iona's parents plan to tell the organisers to give her fruit and vegetables instead of cake or even ice-cream and jelly.

Iona already has a dietician and her parents are working hard to make sure she has a balanced diet.

They plan to run a marathon in Barcelona next month to raise funds and publicise their daughter's illness.

Mr Auld, a police officer, said: "Elaine and I are determined to raise as much money as we can –and hopefully raise awareness of the syndrome.

"Iona means the world to us," he said. "We've already raised a few hundred pounds and hopefully we can make it past four figures.

"Iona faces a long battle with this, so we'll do anything we can to help in a small way."

Glasgow University scientists are taking part in one of several research projects into the illness.

45 children a year suffer 'floppy baby' syndrome

PRADER-WILLI Syndrome (PWS) was identified in 1956 by three Swiss doctors and it hits about one in 16,000 babies born in the UK – or 45 a year.

It affects the hypothalamus in the brain, where the nervous and hormonal functions of the body interact. It is thought to be caused by a defect in a chromosome at, or near, conception. Children born with PWS are often small, weak and floppy and can be slow to put on weight.

Sufferers are often known as "floppy babies", because of problems in controlling their muscles in early life.

By the time they are toddlers, they develop an increased interest in food, which may become an insatiable obsession. Unless the individual's diet is carefully controlled, weight gain can be very rapid, leading to obesity, disease and even an early death.

People with PWS have some degree of learning difficulties, with an average IQ of 70.

However, the Prader-Willi Syndrome Association has stressed it is a physical and not a psychological illness. A spokesman said: "People with the condition do not have the intellectual mechanisms to tell them they have had enough to eat, so they seek out food constantly.

"They will go to extreme lengths to get food, including stealing it or taking money to buy more."