Copyright 2004 Times Newspapers Limited  
Sunday Times (London)
June 27, 2004, Sunday
SECTION: Features; News Review 9
LENGTH: 1247 words
BYLINE: Margarette Driscoll

As children, Jamie and Stephen Heywood were inseparable. Born barely two years apart, they were friendly rivals who played football together and rode the rapids when rain swelled the stream running near the family home.

The son of an English father and American mother, Jamie, the older of the two, was born in Surrey. Soon afterwards the family moved to the United States where his father John is now professor of mechanical engineering at the Massachusetts Institute of Technology.

Jamie followed in his father's footsteps and studied engineering. Stephen became a carpenter, doing fine restoration. His dream was to pioneer a new wave of American craftsmanship. Engaged in physical work he was, not surprisingly, the stronger of the two.

So it was "cool and surprising" to Jamie when they reprised another boyhood game - arm-wrestling -on a holiday in 1997 and he managed to force his brother's right arm down for the first time in five years. He ran around the room, shouting: "I'm the man!"

Jamie was then 30, Stephen 28. Neither of them suspected anything was wrong. But that afternoon was the first sign that their lives were going to change.

Stephen's right hand was weakening. He noticed it properly six months later when he could not turn a key in a door. It took doctors another year to come to a devastating diagnosis as Stephen's arm muscles began to wither.

Stephen had ALS -amyotrophic lateral sclerosis -or motor neurone disease. The deterioration of his nervous system would affect his entire body, causing weakness, paralysis, then death. The average patient lives 2A years after diagnosis, so it was some understatement when Stephen rang his brother in December 1998 and said: "Things don't look good."

"That's when I knew it was serious," says Jamie. "It was the end of a long build-up and it was the worst news it could be."

In years gone by, families given such a diagnosis could do little more than make endless cups of tea. Jamie turned to the internet and typed in "prognosis: ALS".

By the end of the evening, he had determined to "pull Stephen back from the dead".

The story of Jamie's crusade to save his brother is told in a book, 'His Brother's Keeper.' Stephen's condition was diagnosed shortly after Dolly the sheep -the world's first cloned mammal -was born at the Roslin Institute in Scotland and science seemed to offer a dizzying set of possibilities to cure the apparently incurable.

Gene therapy and stem cell therapy hovered on the horizon. Jamie determined to use both -and anything else -to make his brother well. He resigned from his job in California, where he was employed at the Neurosciences Institute to dream up ways of taking gadgets invented by its scientists into the marketplace, and moved back to Boston.

"It was like jumping off a cliff," he says. "I had a young entrepreneur's life in a beach community in California. I was earning good money, feeling great but lacking a real mission in life. I was afraid of dropping out, of hurting my career. But, looking back, it's as if Stephen gave me this great gift of doing something worthwhile."

Today, Jamie is director of the ALS Therapy Development Foundation, a leading scientific body dedicated to alleviating and curing motor neurone disease.

Having resigned from the Neurosciences Institute, he used his contacts to guide him to the greatest minds in the field and set out to persuade them to turn their talents to ALS. He read hundreds of academic papers and studied the nervous system, effectively turning himself from a mechanical engineer to a genetic engineer.

By cold-calling individuals and businesses he raised more than $ 240,000 to fundinitial research. Jamie was motivated by altruism rather than the possibility of making a fortune in the growing field of biotechnology.

A scientist at John Hopkins University in Baltimore, Maryland, suggested the nerve death associated with motor neurone disease might be caused by low levels of a protein. Jamie set up research to see if the DNA that makes the protein could be inserted into Stephen's nerves.

It was a race against time: Stephen's body was beginning to atrophy and he sometimes stumbled. He considered buying a Harley Davidson and riding off round the world until he could cope no longer. Instead, he married Wendy and had a son Alex, now three.

The gene therapy experiments came to an abrupt halt when a volunteer in another trial died; a crushing disappointment for both Jamie and Stephen. The next big idea was stem cell therapy. Jamie pursued a theory that injecting stem cells into the base of the brain might produce new nerve cells. Stephen agreed to try.

It was an emotional rollercoaster. "With ALS you can only really try three or four things before you lose heart," says Jamie. "Each time, it's such a wrench.

Stephen's a realistic guy. I don't think he went into anything thinking 'I'm on the verge of a miracle'. You have to put in a lot of emotional work to try and when you fail..." It must be appalling.

Stephen came through the stem cell treatment unharmed but without seeing any benefit. He is alive, but in a similar condition to the disease's most famous sufferer, Professor Stephen Hawking. Heywood also has a computer system that allows him to communicate, using the same distinctive voice.

Despite Jamie's efforts to cure him and the research being carried out it is impossible to know whether Stephen's survival is anything more than luck. He has been stable for a number of months but the disease is unpredictable.

In its most severe form, sufferers become "locked in", unable to communicate or even to blink their eyes. It affects about 5,000 people in Britain.

The brothers still see each other almost every day. "At one level it dominates your life, it's unbelievable and awful, and at another it becomes ordinary," says Jamie. "I was in Chicago yesterday and Stephen was texting me, making plans to go and see Harry Potter.

"There's no loss of Stephen, he's the person he always was. The tragedy of ALS is that it doesn't affect the mind at all: people who have it learn from their experiences but, as they become wiser as people, they are less able to interact."

Jamie has designed gadgets such as a computer-based television remote control to make his brother's life easier. Stephen still works, overseeing a renovation project on a coach house attached to Jamie's home.

"He has a very normal life. Alex is not aware he's sick. He just climbs on his lap and Stephen has a special computer program that means he can show the pages of a book and 'read' to him. Other kids have to walk; Alex and my daughter can climb up on Stephen's chair and ride. He pulls them along like a train."

This summer their younger brother, Ben, is getting married at the beach in North Carolina where their family has holidayed for 30 years and where the fateful arm-wrestling match took place.

Stephen will be there, very much part of the family. Only a year or so ago they carried him, wheelchair and all, to the top of the Acropolis in Greece. The word "impossible" doesn't have much meaning for the Heywoods, says Jamie. Although seeking to cure his brother might look like a pipe dream, he's not giving up yet.