Always hungry but never full
Siblings save Zach from life-threatening binges and let him lead a healthy life
A BOY who would literally eat himself to death has become a thriving picture of health – thanks to his snitching brothers and sisters.
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.”
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 PraderWilli 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?
“Ge t ma r r i e d ? Ha v e ch i l d re n ? 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!”