Grandmother-of-five Barbara Fraser has pulmonary hypertension, a condition only found once in every 1,000,000 people.

It took several years and a battery of tests to diagnose the problem, only to be told it was inoperable.

She said: "My life was shattered, I thought my world had fallen apart. It was shortly before my son's wedding and I didn't know if I would be alive or what condition I would be if I was.

"Thankfully I was there and looked all right in the photographs but I had to have an oxygen mask on for most of it."

Barbara, who is a scout leader and current president of the Melton Phoenix Lions Club, started having difficulty breathing on a skiing trip in about 2000.

Not one for complaining, she dismissed it putting it down to her fitness levels.

But the problem did not get any better and she visited the doctor who said it was probably asthma.

She tried every type of inhaler and drug but when on holiday with an experienced nurse in 2004 the situation got worse and her friend made her promise to see a specialist.

There then followed a lengthy series of tests, bouncing from one specialist to another, trying every kind of asthma drug and inhaler, allergy therapy and eventually diagnosed with depression.

But nothing worked and she continued to get worse.

Barbara said: "Every little thing I did was a huge effort. I went to see a professor who was extremely disturbed because I had deterioted so much."

He tried to admit Barbara into hospital but she was determined to go home.

A couple of days later she was rushed to Glenfield hospital where she stayed for a month.

After another set of tests, it was confirmed she had a hole in her heart, a leaky valve and one side was enlarged.

The doctors did one final test, just to make sure there was not anything else, and that was when pulmonary hypertension was finally confirmed.

Barbara was sent to Papworth Hospital, a centre of excellence for similar conditions.

She found out then that her case was inoperable and fatal, but thankfully drugs can keep her stable, allowing her to lead a life.

She said: "I used to be a very active person. I enjoyed hill walking and skiing, but I can't do any of that now. What I can do, thanks to all the doctors, is tuck my grandchildren into bed and read them a bedtime story.

"I am one of the lucky ones. The Pulmonary Hypertension Association reckons most people have three years to live once diagnosed. I think I have had it for much more than three years. I am still alive.

"I would like to thank everyone who has helped me particularly the staff at Latham House."