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Last Updated: Tuesday, 24 June, 2003, 10:03 GMT 11:03 UK
Clinging to hope for baby Ella

Plans to expand the use of genetic technology will be welcomed by the thousands of families caring for children with cystic fibrosis. Here, Ed Owen talks about his hopes and fears for daughter Ella, who suffers from the life-threatening genetic condition.

Twelve months ago we knew nothing about cystic fibrosis.

Yet on Thursday, when we celebrate our daughter's first birthday, we will spend a moment reflecting on how the country's most common inherited genetic condition has changed our lives forever.

Ella Owen and her father Ed

Ella arrived last June following a perfectly normal pregnancy.

Like all parents we were looking forward to a bright future with our healthy baby - but within minutes of Ella being delivered, we knew there was a problem.

The doctors told us that she had been born with an unusually swollen stomach, and she was taken away for tests.

After a very serious operation the following day to clear her intestines, which had been blocked by meconium - a baby's first bowel movement - it soon became clear that she was suffering from cystic fibrosis.

The fact that Ella will die before we do is the hardest part of having a daughter with cystic fibrosis.

We had barely even heard of the condition, and certainly had no idea what the symptoms and implications were.

So the last 12 months have been an education in the condition.

Cystic fibrosis creates sticky mucus which clog up the lungs, making digestion difficult.

Gruelling

Ella is particularly vulnerable to colds and infections which risk damaging her lungs.

When she is older she will find it harder to breathe and do the sort of things the rest of us take for granted.

Ella already takes a range of medicines every day, including antibiotics and pancreatic enzymes, as well as extra vitamins.

We also have to give her gruelling physiotherapy twice a day.

These treatments, which have been developed and improved over the last two decades will hopefully help to allow Ella to live as normal a life as possible.

But even now, life expectancy is barely 30 years.

The fact that Ella will die before we do is the hardest part of having a daughter with cystic fibrosis.

Beautiful

That is why we cling to the hope that genetic research can find a cure.

There is a considerable amount of work going into this area, although millions of pounds still need to be raised to fund it and ensure it is completed.

Our lives have been improved immeasurably by having Ella.

She is beautiful, intelligent, funny and happy. To the outside world she looks and behaves like every other baby across the country.

But we live with the constant fear of the time when her health deteriorates.

You put your questions to Rosie Barnes from the Cystic Fibrosis Trust and to Dr Helen Wallace from GeneWatch UK.

The fact that cystic fibrosis is a single gene disorder does increase the chances that scientists will find a cure.

And so, alongside thousands of cystic fibrosis sufferers and their families, we cling to the hope that there will be breakthrough which would transform Ella's life and allow her to look forward to a longer and more fulfilling life.




WATCH AND LISTEN
Ella's parents Ed and Joanne
"It [gene therapy] is the only hope you really have"


The BBC's Glenda Cooper
"We will discover what diseases we are likely to develop later on in life"



SEE ALSO:
Cystic fibrosis 'superbug' found
09 Sep 02  |  Health
Hope for cystic fibrosis
07 Jan 02  |  Health
Gene testing: The pros and cons
24 Jun 03  |  Health


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