Always hungry but never full: Siblings save Zach from life-threatening Prader-Willi Syndrome

Zach Ferguson (Chris Austin / DC Thomson)

Schoolboy Zach Ferguson was born with the extremely rare Prader-Willi Syndrome which means he never feels full.

Left unchecked, some sufferers have literally eaten until their stomachs have popped.

But Zach has no such problem – as he’s permanently monitored by eagle-eyed sister Caityln, 13, and brothers Max, eight and Jay, seven, who tell on him if he as much as tries to sneak a biscuit.

“Having siblings helps, because they all keep a keen eye on Zach,” said Mum Carla, 31. “They snitch on him.”

Zach knows he can’t eat the sweeties, crisps and snacks other kids enjoy. Zach can’t even guzzle bottles of juice or popcorn at the cinema.

But Carla and dad Andrew, 31, try to keep things as normal as possible – and that means a reward every now and again.

“He does get treats, like the occasional McDonald’s,” added Carla. “But not really chocolates and sweets because he’d only want more and more.

“When we go out for meals we have two courses and never puddings and that’s the same for all of us.

“Sometimes Zach might pinch something from the cupboard but it’s much rarer now. I tell him to tell me when he’s hungry and he can gave an apple until mealtimes.”

Now that Zach is 11, he’s more understanding of his condition. “I told him he has an allergy,” said mum. “Like other children might have a nut allergy, and that if he eats too much he will be ill, and he accepts that.”

Zach goes to Isobel Mair School in Newton Mearns, East Renfrewshire, which caters for children with special needs.

At school they get chocolate eggs at Easter, selection boxes for Christmas, “then there’s birthday cakes and the children sometimes bake”.

It could be risky putting Zach in charge of such tempting things, but the clever boy has brought “them all home untouched to divide among the family”.

But in the early days it wasn’t so easy and Carla, a customer service officer, and Andrew a business finance consultant, were traumatised by their newborn son’s arrival.

Carla said: “Tests were carried out then they told us Zach had Prader-Willi Syndrome and asked if there was anyone obese in our family.

“There wasn’t. It came completely out of the blue.

“We were supposed to be getting married in a double beach-side wedding in Florida with my sister Katy and her fiancé Gareth but doctors said we couldn’t take Zach.

“Then they agreed that if we learned how to feed him by tube he could go, so Andrew and I were taught how to insert the feeding tube into our tiny wee baby. He was only 6lb 10oz when he was born at Paisley’s Royal Alexandra Hospital.

“I felt like a monster doing this to my poor baby.”

Zach and his family (Chris Austin / DC Thomson)

Carla and Andrew didn’t have much information on Prader-Willi Syndrome. They had been given leaflets outlining the basics but when they went online it seemed like an imminent death sentence lurking just out of sight.

Carla said: “One day after the wedding we were driving back to our holiday house in Florida when we stopped at the lights. My dad laughed and said ‘Carla look!’

“In front of us was the International Headquarters of the Prader-Willi Association. We had been driving that road for years and never noticed it.”

With four-week-old Zach in her arms, Carla and Andrew went inside to seek advice.

“Maybe that was a turning point. What really helped was knowing that even in Sarasota, so far away from Scotland, children still had Prader-Willi Syndrome and families were living and coping with this. We weren’t alone.”

Carla, of Neilston, East Renfrewshire, is delighted Zach has thrived, and has defied medical opinion. “We were told Zach would need a wheelchair,” said Carla.

“He only uses one occasionally.

“We were told because of his low muscle tone he wouldn’t be very active.

“But he loves swimming and goes horse riding every weekend.”

Carla has sound advice for any other families facing a Prader-Willi diagnosis.

“Don’t look too far ahead,” she said. “It’s true that Prader-Willi can make children drink and drink until their tummy bursts and that happens.

“Will they ever lead a normal life? Will they make friends?

“Get married? Have children? What about bullying? Will they fit in at school?”

She ruffles Zach’s hair and he grins. “Look at my lovely boy.

“He’s so good-natured and he talks to everyone – which can be a problem because we’re all trying to keep our kids safe.

“I tell him he must never speak to people if he doesn’t know their name.

“So the first thing Zach says is “What’s your name?”

She laughs: “He certainly keeps us on our toes!”

Syndrome is complex condition

THE syndrome (often called PWS) is a complex medical condition that can affect both sexes.

According to the Prader-Willi Syndrome Association, it typically causes low muscle tone with motor development delays, and short stature if not treated with growth hormone. Most people with

PWS are floppy at birth with initial difficulties in feeding, but then in early childhood begin to show increased appetite which can lead to excessive eating and life-threatening obesity.

The name of the syndrome is derived from the names of two of the doctors who first described the pattern of characteristics associated with it in 1956.

The Prader-Willi Syndrome Association has a helpline which can be contacted by phoning 01332 365676.

Price in storm over blind son

KATIE Price’s son Harvey has Prader-Willi syndrome.

Harvey, Katie’s son with footballer Dwight Yorke, was diagnosed as blind when he was six weeks old and Katie later discovered he suffered from the complex condition.

The model and author sparked controversy last week when she admitted she would “probably” have had an abortion if she had known he would be born disabled.

The 37-year-old made the comments on ITV’s Loose Women.

She said: “I was young when I had Harvey and I’ve admitted that if I knew he were blind before I had him, as harsh as it sounds, I would probably have aborted him.”

The former model has previously said of the 13-year-old: “Yes, he is challenging and hard work…. but you know, that’s part and parcel of having Harvey and I would not change anything. I love him so much.”

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