Stanley Turner has Crouzon syndrome

by Joe Walker

Running round the garden, a tea towel swinging from his back and a bow and arrow in his hand, Stanley Turner appears to be your typical three-year-old boy. But he is not.

He has Crouzon syndrome, a cruel genetic disorder which has seen him endure 13 operations in his short life.

He has an artificial airway inserted into his nose and a tube running from his skull to his stomach to relieve the pressure on his brain.

The effects of the syndrome - which causes the bones of the skull to fuse together - have distorted the shape of his face and head.

His sight and hearing have also been affected, leaving him wearing glasses and hearing aids.

His devoted parents Claire and Clint take turns to watch over him at night at their home in Western Esplanade, Herne Bay, making sure his breathing tube doesn’t get blocked.

Four times a year he travels to specialists at Great Ormond Street for tests, not knowing if he’ll have to undergo yet another operation.

But the smiling youngster takes it all in his stride, living as normal a life as possible with a condition that affects just 16 in every million newborns.

Claire, 40, and Clint, 41, were among those who had never heard of the syndrome when Stanley was born in 2008.

Former bank worker Claire said: “When I had my 20-week scan the doctors were concerned because the ventricles in Stanley’s brain were swollen.

“They couldn’t say what was wrong, or even that something definitely would be, but when he was born the birth registrar said he thought he had Crouzon syndrome.

“It was the first we had ever heard of it, but we were told he had all the signs - the bulging eyes, the misshapen skull, the small mouth, the lack of cheekbone structure.

“It meant absolutely nothing to us. We just wanted to know what his outlook in life would be - whether he could lead an independent life.”

Stanley saw specialists at Great Ormond Street, who confirmed he had Crouzon syndrome.

He was sent home but after seven weeks was rushed back to hospital after struggling with his breathing.

Doctors inserted an artificial airway and a feeding tube from his nose to his stomach as he couldn’t swallow food safely. It was the first of many harrowing operations for Stanley.

Little Stanley Turner has spent his life in and out of hospitals

When he was two surgeons put a tube into his skull, running down to his stomach to drain excess fluid from his brain.

In September last year a routine eye check at Great Ormond Street revealed severe pressure on Stanley’s optic nerves.

Surgeons decided to carry out an emergency vault expansion, a procedure which involved splitting Stanley’s skull in two and moving one part 5cm backwards.

Springs were then inserted to allow new bone to grow in the gap, but they became infected after four days, so had to be taken out.

Claire said: “It was horrible and there was a time when he deteriorated really quickly and they rushed in with the crash trolley - we would thought we might lose him.”

Stanley started playschool at the Avenue Nursery in Herne Bay last September, but missed five months because of the operation.

Stanley Turner, who has Crouzon syndrome helps mum Clare in the kitchen of their Herne Bay home

Things have settled down since but Claire says planning ahead is hard because the syndrome is so unpredictable.

She said: “They can’t give you any timescales with Crouzon syndrome. Things can happen without warning. It’s very frustrating.

“You can’t plan too far ahead. We have to live day by day.”

Despite his condition, Claire and Clint - who also have a five-year-old daughter called Harriet and a three-month old son called Frederick - have no intention of holding Stanley back.

Claire said: “He’s a typical boy with a big personality. We try not to wrap him in cotton wool.

“It’s not good for him. He’s just got to learn to get on with it.

“Kids can be cruel and we worry about name calling, but Stanley will have to learn to fight his own battles. We will support him, but sometimes you can do more damage wrapping kids up and hiding them away.

“Of course we’ve had to adapt, but life does go on. It has certainly taken us on a journey and things that were important then aren’t so important now.”