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BIG JOY OF THE BOY WHO CANNOT GROW; Surgeons rebuild 37-inch Brendan - and pull him from the brink of death.

Little Brendan Kirwan laughed with delight after being told off by his parents for getting soaked in a water-pistol fight with friends.

Brendan, seven, was thrilled that he was being treated as a normal mischievous boy - because a year ago he was virtually paralysed and on the verge of death.

The youngster is the first person in Ireland to suffer metatropic dysplasia - a rare form of dwarfism affecting just 29 people in the world.

Last year Brendan was deteriorating rapidly because his grossly-distorted backbone was trapping his spinal cord.

Doctors in Ireland said there was nothing they could do.

Brendan's spine was bent 100 degrees forward and 60 degrees to the right.

He had never been able to stand and his poor breathing meant he was susceptible to every infection.

Getting wet in a water fight could have proved deadly.

His dad Brendan, 41, and mum Debbie, 34, had been told from the beginning that he would not survive childhood.

`It was the longest day of our lives'

Doctors tried to prepare them for the worst.

The devoted parents sold their lucrative clothing manufacturing business to give round-the-clock care to their son.

The couple, from Tallagh, Dublin, who have six other healthy children aged six weeks to 16, found a doctor in America who said surgery was possible.

The Kirwans raised nearly pounds 30,000 to send Brendan to Delaware while Dr Charles Scott assembled a team of 10 specialists from all over the US to carry out a gruelling 18-hour operation.

It took three weeks just to get the team together.

They included an orthopaedic surgeon, a neurosurgeon, a cardio-vascular expert, an ear and throat surgeon and a general surgeon.

"They literally cut Brendan's spine vertically down the middle and built up the whole backbone area," said Mr Kirwan.

The team cut out part of Brendan's skull to allow him to move his head forward and make breathing easier. They took out three ribs and used the bone to strengthen the spinal area and cut the curvature from 100 degrees to 53 degrees.

Brendan's dad said: "How he survived the operation we will never know.

"We all feared he would die but he had no other hope.

"He was losing movement in his arms and his legs because of his trapped spinal cord and we were told he would be quadriplegic within a couple of months.

"We could see him dying in front of our eyes."

Brendan went into surgery at 8am and didn't come out until 2.15am the following day. His dad said: "It was the longest day of our lives. All the surgeons stayed for the whole operation.

"They woke him up immediately to see if he could wiggle his toes or if he was paralysed.

"You can imagine our relief when he could. But he was unrecognisable as our son - he was completely bloated because of all the surgery.

"The doctors had completely replaced his blood three times during the operation."

Little Brendan, who measures only 37.5 inches and can expect to grow just another 1.5 inches, spent the next five months in intensive care.

But today, exactly a year after the incredible surgery, he is a new boy.

His doting dad says: "You just wouldn't recognise him.

"A year ago we couldn't let him out of the house because if he got wet it could kill him.

"He was worse than an AIDS victim and would get every infection going.

"If there was a breeze he would get a chest infection and we nearly lost him many times.

"His immune system was incredibly weak and he was constantly on antibiotics.

`We never thought he would walk'

"He spent the first two thirds of his life in hospital with infections.

"But in the last year he has had just two. He is now a million times better and his quality of life has improved enormously."

Brendan's corrected spine means he no longer has to lie on the floor at an angle with his head back to watch TV.

He is able to use an pounds 3,500 electronic wheelchair which gives him independence and allows him out to play.

A fibre body-cast keeps his spine in positon and this will be replaced later this year with a body brace during a return trip to the States.

But the greatest joy for the Kirwans came when they saw their little boy walk for the first time - something they never imagined was possible.

Mr Kirwan remembers the exact moment.

"It was November 28 and he took 17 steps. Everyone was very emotional. We never thought we would see him walk."

Debbie said: "When he stood up on his own the whole physiotherapy department was crying - and so were we."

Doctors now believe Brendan can lead a relatively normal life and his life expectancy is good.

He is extremely bright for his age and although only seven he is already an expert on the Internet.

"His teachers say he is like a sponge at school, just soaking up information," said his proud dad.

"He can get though a book which is supposed to last a term in two or three weeks.

"He is full of beans and very competitive. He loves the independence he has got now and is full of confidence."

Life in the Kirwan household had revolved around Brendan since the day he was born.

One of his parents always had to sit with him through the night in case he stopped breathing. "It was torture. Even if he sighed for a second the alarm would go off and you would jump out of your skin," said Mr Kirwan.

The enormous strain has left Brendan Senior on heart tablets and he calls himself "a walking heart attack."

But now he and Debbie are looking forward to leading a more normal life themselves and he is currently back at work building a hairdresser's shop.

Mr Kirwan said: "It is the first time in seven years I've been able to work.

"I am a very active person who is not cut out to be sitting around.

"But everything revolved around Brendan and the other kids adopted very well to the situation.

"They are very protective and very possessive of him. They will not let anyone bully him or call him names.

"They will run and get him anything he needs.

"It is great to see. Our only worry is if anything should happen to us."

The Kirwan family has been left with a massive pounds 270,000 debt for Brendan's medical care.

Mr Kirwan has had to pledge pounds 1,000 a month to the American hospital for the rest of his life.

The couple have bought a ventilator for their home which Brendan uses four times a day to exercise his lungs.

The youngster travels to Delaware again next month when he might need a bone graft in his neck.

But his parents do not complain about their lot.

Instead they count their blessings that the three children who came after Brendan - Pearse, six, Charlotte, three, and baby Shauna - were born healthy.

`He's a boy in a million'

Doctors only told the couple last year that all their children had a 25 per cent chance of having the same condition when they were born.

It is caused by a rogue gene - an auto somal recessive gene - which both parents carry.

"Only one person in every 1.5 million people has it so the chances of me and Debbie both carrying it were almost impossible," said Mr Kirwan.

Which proves that little Brendan is a boy in a million...

Contributions to the Brendan Kirwan Trust can be made to the TSB Bank, Ballyfermot Road, Ballyfermot, Dublin.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1997 Gale, Cengage Learning. All rights reserved.

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Author:Gallagher, Jim
Publication:The People (London, England)
Date:Aug 24, 1997
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