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WORRIED Sandra Wright was told she was just an over-anxious mum after making countless doctor's appointments for her baby son, David.

Her boy was under a year old and couldn't seem to shake bouts of sickness and diarrhoea - but doctors said there was nothing wrong with him.

It was only after he suffered a near-fatal chest infection shortly after his first birthday that doctors carried out a test revealling what was really wrong with him.

Little David was suffering from cystic fibrosis, a disease that blights thousands in the UK.

Sandra, of Edinburgh, said: "It was such a shock.

"Until the diagnosis was made, I was constantly at the doctor's surgery, but they just said David's older sister Kayleigh was bringing in germs and thought I was being over-anxious."

Sandra, 42, and husband, David 44, were devastated.

She added: "It was an incredible shock because I had been tested for cystic fibrosis in pregnancy and the test was negative.

"It turns out that I carry one of the rarer variants of the gene that causes the disease, and which does not show up in the pregnancy test."

Cystic fibrosis is the UK's most common life-threatening, inherited disease and the average life expectancy of sufferers is only 31.

Finding out their son had the disease was a terrible blow, but Sandra and David felt they would have been able to cope better had they known earlier.

She said: "It is quite simple to test babies for cystic fibrosis when they are born, but we were not offered the test. If we had found out earlier, David would not have been so ill and we would have been better prepared. As it was, he suffered a lot his first year and we nearly lost him."

Now five years old, David bravely soldiers on and sometimes it's hard to believe he has the killer disease. However, it takes hard work and a strict routine to keep him healthy.

Cystic fibrosis attacks the lungs and the digestive system, clogging them with thick, sticky mucus that makes it difficult to breathe and digest food. To keep his lungs clear, David has to endure two sessions of gruelling physiotherapy each day - sessions which he absolutely hates.

Sandra said: "He has to lie on a bean bag with his bottom higher than his head and his chest is pummelled for about 15 minutes to dislodge the mucus from his lungs. It's not supposed to be sore, but it is."

Sandra now carries out the physio, but initially a physiotherapist had to come in and help because David found it so hard to take.

Now, although he does not like it, David knows it is important and submits to the sessions. Despite all this, he's still prone to infections which severely affect his health.

As a result, just a hint of a cough means a round of oral antibiotics while anything more serious requires intravenous injections.

IT is not just David's chest that is the problem. His digestive system can become clogged by the mucus and he has to take an enzyme before he eats to help him digest fats.

David's sweat is also thicker than normal, so he loses more salt than other people and needs to replace it in his food.

His parents try to be as positive as they can and keep his life as normal as possible, but David does sometimes complain because he realises he is different from other children.

The family do not know what the future holds, but they've been encouraged by David's progress and by support they've had from family, friends and cystic fibrosis nurses.

Sandra added: "When they first told us, I was devastated because I pictured him lasting until he was 10 years old and that would be the end. I am now hopeful the situation for people with the disease will improve.

"I guess it will be a battle to keep him well during the teen years, but I try not to think about that and concentrate on keeping him well.

"However, what we have come to realise is that if you do have a child with cystic fibrosis, it is not the end of the world.

"You can still have a good family life and a happy child."

Sandra strongly believes neo-natal testing for cystic fibrosis should be offered to all new parents. Routine testing will begin in Scotland in January, 2003, but the rest of the UK has still to follow.

lDavid Wright's story is featured on a special programme about cystic fibrosis on BBC Radio Scotland's Medical Matters today at 11.30am. It will be repeated tomorrow at 10.30pm.

the facts

CF affects 7500 babies, children and young adults in the UK.

Every week, five babies are born with CF and every week three young people die - usually as a result of lung damage.

One-in-23 people in Scotland carries the defective gene that causes CF - more than 2.3million people in the UK.

Both parents have to be carriers of the gene for there to be a one-in- four chance of their child having CF.

For patients with severe lung damage, the only treatment left available is a lung transplant.

Since the gene that causes CF was discovered in 1989, a whole new realm of research has opened up, aiming to correct the basic genetic defect rather than treat symptoms.

More research into gene therapy is needed and scientists say a very effective therapy could be developed if an extra pounds 15million was invested over the next five years.

For more information call the Cystic Fibrosis Trust on 0208-464-7211.
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Title Annotation:Vital
Publication:Daily Record (Glasgow, Scotland)
Date:Oct 16, 2002
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