A father's quest to help prolong his son's life has led him to give up alcohol and encourage celebrities to do the same. Liz Lamb reports.

SMILING Sam Smith will celebrate his sixth birthday today. As he opens his cards and blows out the candles on his cake, he will be unaware that in a few years, he will be confined to a wheelchair, stricken by a condition which claims 100 boys' lives a year.

His parents, Elaine and Danny, are dreading the day they will have to look into their son's eyes and tell him his fate but, by then, they hope advances in science will have developed enough to prolong his life into middle age.

It was almost three years ago that the schoolboy was diagnosed as suffering from Duchenne Muscular Dystrophy (DMD), a severe and progressive muscle wasting disease which almost exclusively affects boys. Every week two young males in the UK are born with the genetic condition and those affected are often confined to a wheelchair by the age of nine and only survive into early adulthood. Only identified in 1986, DMD is the biggest genetic child-killer.

It is facts and figures like these that the Smiths shield Sam from but the older he gets, the more he begins to realise how different he is to his friends. Danny, 41, a teacher at Ryton Comprehensive school, in Gateshead, says: "He has become more aware of his condition.

"This time last year we could have pulled the wool over his eyes but not now. One day we will have to sit down and tell him. He knows he has medicine, he knows he has to go to the hospital, but he doesn't know the facts. The day is getting closer when we will have to sit down, look into his eyes, and tell him."

Sam was first diagnosed with the condition in November 2002. His parents were becoming concerned that he was not progressing as fast as his older brother Ben, now eight, who was very active. After a trip to the doctor, the Smiths had to take the six-year-old to the Centre for Life in Newcastle for the results of a blood test.

Danny describes the day his son was diagnosed as the longest day of his life. "When he turned three, Sam struggled to walk and could not climb the stairs," says Danny. "His older brother Ben is very able and sporty and compared to him, Sam really was completely different.

"We never expected for a minute that it would be anything serious. You never imagine it will happen to your family. It was a devastating day. Life has never been the same since."

The Smiths were given the diagnosis by Professor Kate Bushby, a leading international figure in her field, who works at the Centre for Life, where some of the research into DMD is carried out.

Spurred by love for his child and a desperate need to raise awareness of the disease, which the family knew nothing about, Danny set out on a marathon challenge to raise funds for research.

Exactly a year ago, he held a 'Longest Day' event at his school and encouraged 50 other schools in the region to take part in fund-raising, achieving a grand total of £60,000.

Not prepared to rest on his laurels, the doting dad then came up with an idea to give up alcohol for a year and encourage celebrities to do the same, although they were only asked to give up drink for a day. The impressive list of over 100 celebrities Danny has enlisted to help raise awareness about the condition is enough to make any PR supremo purr with delight.

Those taking part in the 'Longest Year Project' include football legends Peter Beardsley, Gazza and Gary Lineker; Cliff Richard, Chris Tarrant, Lionel Blair, Chris Eubank, members of Newcastle United FC and producer Peter Waterman. Former health secretary and Darlington MP Alan Milburn has also been a staunch supporter of the project.

"It is all to do with Sam and to raise awareness. It has been a traumatic time," says Danny. "One of the reasons I am so determined to get something done and to raise the profile of the condition is because there is the science out there which can save my son's life. That is our main drive behind this project. It must be the most awful thing to have to bury your child."

This week, Danny was joined by Ian and Susan Miller, the parents of Daniel, another sufferer of the condition, who lives in Great Lumley, County Durham, to lobby Parliament for more funding. The parents, along with other families from across the UK, handed in a petition at Number 10 to ask for £5m over the next three years to fund gene therapy research.

Sam is currently receiving steroid treatment at the Centre for Life, which improves the quality of his life, but more money is needed to enable scientists to prolong life and find a cure.

The Newcastle institution, along with centres in Oxford and London, are working together on gene therapy and scientists believe they could be only steps away from dramatically increasing the life expectancy of sufferers.

"In 30 years there will be a genetic cure for this," says Danny. "That is without a doubt. The science exists but it needs time and money to proceed.

"It is a long, complex process and we need more money to fund it. We could save 100 lives a year. If that many children died on a motorway each year, the Government would pledge money to do something about it."

A £1.6m research grant was awarded by the Government to be shared among the three laboratories but more is needed, and campaigners are due to meet health ministers on Tuesday to press the case for a further £5m.

It has been a long battle to raise funds but for Danny, who hasn't faltered from his alcohol abstinence over the past few months, 2006 will be a year for the family.

He is hoping to take a back seat from fund-raising in order to spend more time with wife Elaine, 39, and sons Joe, three, Sam and Ben, at their home in Whittonstall, Northumberland.

"We need to spend time as a family for a while. Since the day Sam was diagnosed, we have never felt the same," says Danny. "We hope the day never comes when we outlive Sam - that would be awful. It should never happen to any parent."

* To pledge money for research into DMD visit Danny Smith's website at www.thelongestyear.co.uk