Families unite after tragedy

SARAH Marsh was born with cystic fibrosis in 1969 and spent her whole life fighting to live a normal life.She first hit the headlines in February 1994 when she underwent a heart and lung transplant in Papworth hospital in Cambridgeshire.

By Paul Geater

SARAH Marsh was born with cystic fibrosis in 1969 and spent her whole life fighting to live a normal life.

She first hit the headlines in February 1994 when she underwent a heart and lung transplant in Papworth hospital in Cambridgeshire.

This gave her a new lease of life.

Later in the year she married Nick Boulter, whom she had met while working for the East Suffolk Health Authority.

She became a passionate advocate for transplantation. As part of her operation her own healthy heart was transplanted into another patient at Harefield Hospital in Middlesex.

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Sarah addressed health meetings pleading with them to spread the message that carrying donor cards can save lives.

She changed jobs, working at what was then called University College Suffolk in the personnel department, and remained at work until a week before her sudden death in July 1997.

No one who met Sarah could forget her determination - or the permanent smile on her face which showed that while cystic fibrosis is a devastating condition, it was no barrier to living life to the full.

CF is a genetic disease which causes the build-up of mucus in the lungs and other internal organs.

It is Britain's most common inherited disease - affecting 7,500 children and young adults.

In 1930 the life expectancy of a baby diagnosed with CF was a few months. Now it is 31 years.

CF sufferers are more susceptible to infections and also find it more difficult to digest food.

Most sufferers need to take a number of drugs every day - and also to have regular massage to clear mucus from the lungs.

For an increasing number of patients, transplantation is helping to extend their lives. The longest a CF patient has lived after a transplant operation is 12 years.

Source: The Cystic Fibrosis trust.

AISLING McGuire is just like any other seven year old.

She's bright, loves life, enjoys going to school and playing with her friends - but the shadow of cystic fibrosis hangs over her.

Mum Catherine explained what the condition means to her: “Aisling has to take 40 tablets a day just to keep her alive and things can change.

“At the moment she is pretty well - that is largely because of the weather at this time of the year but last autumn she had to go into hospital for a fortnight and was in hospital again for a couple of weeks just before Christmas, she came out on Christmas Eve.

“You can't get away from the fact that CF has a massive effect on her life and on the rest of the family. At the moment her life expectancy is put at 31.”

Mrs McGuire has become very active in the Cystic Fibrosis Trust, and 18 months ago she helped organise a dance in Ipswich which raised £15,000 for the charity.

“The trust does a great deal of research and in supporting families - it has been very supportive to us,” she said.

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