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OP AGONY FOR BABY WITH 56MILLION-1 CHANCE OF SURVIVAL; Docs cancel lifesaving surgery with just 2 days' notice.

Byline: Marie Sharp

THE family of a baby with a 56million-to-one chance of survival have been left devastated after a life-saving op was cancelled with two days' notice.

Joshua Adair has Jeune's syndrome - rare form of dwarfism that stopped his ribcage developing.

He has no rooms for his lungs to grow and his chest would literally crush the life out of him.

The five-month-old was due to travel to Great Ormond Street Hospital today, where surgeons were to build him a new chest.

Joshua's Glaswegian dad Mark and mum Amanda were getting ready for the trip when they got the bad news.

Mark, 35, said: "Joshua's operation was scheduled for Thursday but we've been told there has been an emergency and as a result there are no bed available so the surgery has been cancelled.

"We're just devastated. Every day Joshua survives is a miracle and we don't know when he will now get this chance again.

"All our hopes were pinned on this and now we are back to waiting again. It's heartbreaking."

Doctors told Joshua's parents it was unlikely their baby would survive more than a couple of weeks after his birth and the family held a christening in the hospital days after he was born.

But five months on, Joshua is proving the experts wrong and thriving, despite being hooked up to oxygen 23 hours a day.

The youngster faces several ops to build and expand his ribcage as he grows older.

Mechanic Mark lives with his partner Amanda and their fiveyear-old son Ethan in Stockport, Greater Manchester.

The couple were recovering from the stillbirth of a baby girl Chloe last year when Amanda fell pregnant again.

Her 20-week scan revealed their new baby had problems but they agreed to hope for the best.

Joshua is on a ventilator 23 hours a day and has remained in Stepping Hill hospital, Stockport, since his birth in June.

Mark said: "Everyone warned us Joshua may not live but he has proved a wee fighter.

"We know it's a tough road ahead and Joshua will face many operations but we have to give him every chance. We are just desperate to get on with it."

Joshua's paediatrician at Stepping Hill, Dr Carrie Heal, said: "Jeune thoracic dystrophy is very rare and there have only been around 125 reported cases since it was first described in 1955."

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BATTLER Brave Joshua. Right, with mum Amanda and big brother Ethan WAITING Dad Mark and Ethan
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Publication:Daily Record (Glasgow, Scotland)
Date:Nov 2, 2011
Words:414
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