Ref. 12547/1GAZETTE & HERALD: Holly Masson, aged six, has been suffering from cystic fibrosis since birth and now her mother feels it is time to educate pupils and staff at her daughter's school about the life-threatening illness.

This week is Cystic Fibrosis Awareness Week and the trust's 40th anniversary. The trust funds medical research and provides care to families affected by the disease.

Mother-of-two Liz Masson, who lives in Braemor Road, Calne, with her husband Graham, daughter Holly and 14-year-old son Chris, has been collecting for the charity and letting people in her community know about her daughter's illness.

Holly attends Fynamore Primary School and each day she has to take a mixture of drugs to prevent her from becoming ill.

"It had got to the stage where the children and their parents started to ask questions about Holly. The kids stare at her when she is taking her medication when she is eating. That's why it's important that they know why she takes it," said Mrs Masson.

This week two child nurses from Bath's Royal United Hospital visited Fynamore School and talked to all the pupils and staff about cystic fibrosis.

The school is fundraising for the Cystic Fibrosis Trust by holding a raffle and a bring-a-teddy-to-school day.

Cystic fibrosis is the UK's most common life-threatening inherited disease affecting 7,500 people. At present, life expectancy is around 31 years.

It is caused by a single faulty gene and a person must inherit two copies of this faulty gene, one from each parent, to develop the disease.

People who have the condition produce a very thick sticky mucus which clogs their lungs and digestive systems making it difficult to breathe and absorb food properly.

Regular enzymes have to be taken with meals to help control digestive problems. The lung problems result from the pressure of the mucus, which attracts infection. This is controlled by physiotherapy and drugs to help clear the mucus and antibiotics to tackle the infections.

Holly was diagnosed when she was five months old after she suffered digestive problems. Mrs Masson said: "It was a very hard time for us. Some people just stare, which is so awful especially when she was a baby.

"We had to give her a lot of drugs and people look at you as if to say 'what on earth are you doing to that child?' We had to sneak into the corner and it was as if we were embarrassed of our child," said Mrs Masson.

But over the last three years Holly has been doing well and has not had a stay in hospital for two years.

To add to the family's difficulties Chris, who has recently joined Springfield School, suffers from Asperger's syndrome and attention deficit hyperactivity disorder.

Mrs Masson said: "He dotes on his sister but he is a worrier."

She said it was very important that the family tried to keep life as normal as possible and she and her husband try to go away together from time to time, but this is difficult to organise.

Mrs Masson said it was difficult when people told her they knew of people with cystic fibrosis who had passed away.

"In the long term hopefully Holly will lead a normal life. She does get tired easily but it doesn't stop her. She keeps going and loves to dance and sing," she said.