Amanda Evans will never forget her visit to the Ladies’ Wimbledon final in 2008. Not because she saw Venus Williams snatch her fifth Wimbledon title, but because of what followed.
“Since I was ten, Dad had always taken me to the final,” she says. “We had a wonderful day with strawberries, champagne and Pimm’s, but on the way out Dad started struggling for breath and couldn’t walk to the car park.”
Three months later, her father David Evans, millionaire businessman and outspoken Thatcherite MP, was dead. He was 73.
“He was a huge personality and my best friend,” says Amanda.
Although the MP’s death got considerable press coverage at the time – he’d been a colourful figure in Westminster politics – pulmonary fibrosis, the condition which killed him did not.
Five thousand people a year in the UK are diagnosed with pulmonary fibrosis, most of them over 60. “It’s becoming more common, and we have no idea why,” says Professor Richard Hubbard, who is leading a research team into the illness at Nottingham University.
“When they get a diagnosis people often say, ‘Well, thank God it’s not lung cancer,’ but cancer can be treated. This can’t.”
Before his sudden breathlessness, Evans’ only problem had been a dry cough for several months. Symptoms such as these often get mistaken for other forms of lung disease but in his case, a chest scan at his local hospital in April picked up the scarring.
He was immediately admitted, given high doses of cortico-steroid drugs to reduce inflammation and delay further scarring, and was also put on oxygen.
Why he developed the disease was a mystery. “He’d always been fit and never smoked,” says Amanda. “He swam every day in our pool. He had a successful office cleaning business and he loved to go to work. Now he was attached to an oxygen tank by a long plastic tube. The cylinders had to be changed every two hours. He hated them. What he loved most was walking Ozzy his cocker spaniel, but he couldn’t even do that anymore.”
To keep him mobile, the family bought portable battery-powered oxygen containers. Shortly after his diagnosis he consulted Prof. Duncan Geddes, a specialist in respiratory medicine at the Royal Brompton Hospital in London, accompanied by Amanda and her brother, Gary.
Prof. Geddes said, “You’ve got eight weeks left,” remembers Amanda. “He was spot on. I sat there crying. Dad said, “We won’t tell your mother.”
Gary did research online and found a hospital in Boston specialising in thoracic medicine. Shortly after, Evans flew to the US with his wife Janice and Amanda. He had been warned by doctors he might not make it back.
“There was a very sad moment when he said goodbye to Ozzy,” she says. “His main goal was to be able to walk him round the garden again.”
In Boston for three weeks, he decided to try for a lung transplant. These are rare in Europe for people over 60 but in the US, with private medicine, things are more flexible.
“Dad just never gave up,” says Amanda. But the transplant never took place: in October, still in Boston, he died in intensive care. “We miss him terribly,” she says.
Amanda writes children’s books, but spends her free time trying to raise awareness of Pulmonary Fibrosis and money for research.