Spotlight on son’s killer

Aug 18 2007 by Sam Wood, The Journal

Liam Gash from Sunderland was enjoying the trip of a lifetime to Australia when he died at 22 of a rare condition no-one knew he had. A year on, his family are still looking for answers. Now they want to warn others about Marfan syndrome. Sam Wood reports.

THE day Liam Gash was born, his dad Alan was the proudest man in Sunderland.

Liam was a perfect baby – and a big boy too.

“Look at his huge hands,” Alan said to the doctor. “Are they supposed to be like that?”

The doctor smiled. “He’s just a big lad,” he said.

Delighted, Alan rang the relatives. “Our son’s got goalkeeper’s hands,” he told them.

Sure enough, young Liam loved his football. At 21, he had everything to live for: great mates, good job, close family. There were girls, too, but no-one special.

Football came first. He played in a Sunday league team, never missed a Sunderland AFC game.

He was handsome, too. Slim and exceptionally tall – around 6ft 10ins.

In November 2005, Liam said goodbye to his parents and sister Lucy, 19, and set off from the family home in Fulwell, Sunderland with his mate Chris to see the world.

“He had a true zest for life,” said his mum Jane, 49. She missed her son. But there would be plenty to celebrate at the end of his trip in November 2006.

Nothing could have prepared Alan and Jane for the phone call they received on August 9 last year.

It was a doctor at the Royal Perth Hospital. Liam was seriously ill.

He was working on a building site when chest pains hit him. Surgeons diagnosed an aortic dissection – a tear in the biggest artery of the body. He needed an urgent operation to replace part of the aorta and the mitral valve in his heart.

Medics suspected they knew what was wrong: a condition called Marfan syndrome.

Stunned, Alan and Jane travelled to Liam’s bedside. As he recovered from surgery, doctors explained his old, carefree ways – playing football, messing with his mates – had gone for good.

It was almost impossible to take in. Liam had always been fit and strong.

True, he had had all the normal childhood health problems, plus a few extra. And, of course, there was his height. None of it seemed to bother him, although as a teenager he got self-conscious about his “pigeon” chest and odd-looking feet.

His family doctors had said everything was fine. Back then, his parents wondered if they were being over-anxious.

If they were, few would have blamed them. In 1985, when Liam was two, his six-week-old brother Joe died of cot death.

Somehow, his parents coped. “Liam helped us through it,” said Alan.

As they sat by his bedside 20 years later, they could only be thankful their elder son seemed to be over the worst.

“We knew he had a different life ahead. But he could have coped. He was fit, he was going to be all right,” said Alan.

At 8.30pm on the Saturday they said goodnight to Liam. He was tired, hot and needed rest.

At 4am they were woken by banging on their hostel door. Liam had had a seizure and was on life support.

They stood by his bed as doctors fought to save him. Nine hours later, on August 13, Liam was dead.

The surgeon who broke the news explained everything. And numbed by grief as they were, Alan and Jane had a terrible sense of recognition.

Marfan syndrome is an inherited disease of connective tissue found in around one in 5,000 people. Sufferers tend to be exceptionally tall with long fingers and hypermobile joints.

It can affect the skeleton, eyes and – most seriously – the heart. Undetected, a heart defect can kill, often in young adulthood. There is no cure.

If diagnosed early, sufferers can protect themselves by avoiding exertion. But Liam had not been diagnosed. He hadn’t had a chance.

Back home, Alan combed through Liam’s medical records. A Marfan feature was present on almost every page.

At just two his prominent chestbone was first spotted. There was a string of visits to GPs and specialists, a battery of tests and X-rays.

Doctor after doctor commented on his hypermobile joints and his height. By five he was 4ft 5ins; at eight, just over 5ft. By 10, he had visited doctors 60 times.

At 17, a consultant noted his clawed toes and referred him to yet another specialist. Liam never showed up. Perhaps he never got the letter. Perhaps he was sick of doctors, says Alan.

Alan contacted the medics who treated Liam. He asked: “Didn’t you see what was going on?”

One paediatrician who saw Liam as an eight-year-old was amazed to hear how tall he had grown.

He told Alan: “You just can’t get to be that tall in this country without considering Marfan.”

Another doctor apologised to the family on behalf of the medical profession. “I don’t know if ‘sorry’ is what I want,” said Alan. “It’s not a legal issue, it never was. These doctors were good people, with good intentions. We expected them to know.”

The whole family has been tested. Lucy, now 20, is clear, as is Alan. Jane awaits the result of final tests to confirm she does not have the syndrome.

Liam’s family is campaigning to raise awareness of Marfan.

A fundraising evening will be held on September 15 at Sunderland AFC. Cash from a sponsored walk has already gone to the Marfan Trust, headed by Dr Anne Child of St George’s Hospital in London, whose work helped pinpoint the gene responsible for Marfan.

Dr Child said: “We hear too many heartbreaking stories like this. We are working with families to raise awareness so that every tall child has an echocardiogram, especially important for tall young athletes. The condition is now treatable in all its aspects, but we are fundraising for research to find a cure.”