Sarah Brown delivered an appeal for sick children in the African state of Malawi yesterday, hours after news broke that her baby son had cystic fibrosis. The Chancellor's wife told television viewers in Scotland: "I don't think that any child or any mother should be dying in Malawi due to inadequate healthcare.
"I know that people in Scotland will give generously to STV's Christmas appeal. And don't forget to use Gordon's gift aid scheme which adds 28p to every pound you donate."
The Chancellor and his wife were said by friends to be positive about the future of their four-month-old son, Fraser, who has been diagnosed with the genetic disease. They have an older son, John. Their first child, Jennifer Jane, died 10 days after being born prematurely in 2002.
Cystic fibrosis is the most common life-threatening inherited disease in the UK, affecting about 7,500 babies, children and young adults. It is caused by a defective gene that clogs the internal organs, especially the lungs and digestive system, with thick, sticky mucus. This results in chronic infections and inflammation in the lungs and difficulty digesting food. Each week, five babies are born with cystic fibrosis and three young people die, 90 per cent from lung disease. Formerly, sufferers rarely survived beyond early childhood, but life expectancy has now reached 31.
It is hoped that by the time Fraser reaches that age, a form of inhaler would have been developed able to correct the faulty genetic material causing it.
Goodwill messages poured into the Browns' home after the news broke on Wednesday evening, including one from the Conservative leader David Cameron and his wife Samantha, whose four-year-old son, Ivan, has cerebral palsy. Mr Cameron said: "Sam and I are thinking of Gordon and Sarah and their family at this time, and we send them our best wishes for the future."
Mr Brown's brother, John, said: "The key thing was that the baby arrived safely, given what they have been through."
Ed Owen, a friend of Mr Brown and former political adviser to Jack Straw, has a four-year-old daughter with cystic fibrosis. He described the treatment sufferers receive. "It's a pretty rigorous, heavy-duty regime of medication, physiotherapy, regular hospital trips, but within that and alongside that, kids can enjoy a relatively happy lifestyle, and there's every prospect that Gordon and Sarah's son will have that for years to come."
Rosie Barnes, the former SDP MP who heads the Cystic Fibrosis Trust, said although the disease remained a "very serious medical condition", advances meant the future was much more optimistic than it used to be.
"I believe Fraser was tested at birth for cystic fibrosis, so it would be diagnosed a few weeks after he was born," she said. "If that test takes place, it's very quick and treatment can start immediately. A child diagnosed at birth and treated immediately should remain quite well."
Ms Barnes said while people in their twenties and thirties were waiting for lung transplants, the treatments today were not available when they were children.
Mr Brown, who is expected to take over from Tony Blair as Prime Minister next year, said after Fraser's birth: "I love being a dad. It's great fun and there's nothing more important and there's nothing I enjoy better."
A Downing Street spokesman said anything Mr Blair had said to Mr Brown about Fraser was a private matter.
Oli Lewington, magazine editor, 24: 'Fraser has a much better outlook than I had'
Oli Lewington, 24, was diagnosed with cystic fibrosis at 18 months and enjoyed an independent life until his late teens.
He said the major difficulty with the condition was its unpredictability - he does not know how he will feel from one day to the next.
Mr Lewington was born when treatment was in its very early stages, but says things are more positive for babies born with the condition today. "When you compare me to someone in the Brown family's position, Fraser has much better outlook than I had when I was diagnosed," he said.
"He has been diagnosed very early which is vital in cystic fibrosis because the earlier you start treatment for enzyme deficiency and the earlier you start physiotherapy for the chest [which reduces lung damage], the less you miss out on.
"For my first 18 months I was hardly getting any nutrients which meant I was very sickly. The early stages of infancy make such a difference to the rest of your life."
Mr Lewington, who writes and edits CF Talk magazine, published by the Cystic Fibrosis Trust, says he has to get used to being increasingly dependent on others. "As you get older, things get harder. Up to my late teens I was quite independent and free to do what I wanted to do. From the age of 20, I started to suffer more infections and worse infections."
He said trials for gene therapy, which are due to start in April, may be of no use to him but could mean the world of difference for Fraser Brown.
"It's conceivable that within his life there's going to be a significant step forward in the treatment of cystic fibrosis. It will hopefully mean Fraser can live a full life without facing the restrictions cystic fibrosis has placed on me."Reuse content