We just want hope for Ella

We have got our morning drill down to a fine art now - though I am not sure our one-year-old daughter, Ella, would agree. As soon as she wakes, all happy and expectant smiles, I whisk her downstairs to be stretched across one of our laps, head pointing towards the floor. Then, while Bob the Builder, Teletubbies and the other heroes of children's TV do their best to distract her, we spend what seems like an age beating her chest.

Next, she gets her first shot of antibiotics of the day, carefully measured out in a syringe and squirted into her mouth. Then there are the vitamin supplements. And finally, there's a spoonful of pancreatic enzymes to be swallowed - an essential task, carried out before every meal to help her digest her food.

After all this, Ella can settle down and have her breakfast, though this is just the start of what will be yet another day punctuated by the ritual of medication and physiotherapy endured by all sufferers of Britain's most common life-threatening genetic condition, cystic fibrosis.

Just over 12 months ago, as we looked ahead to a new life with a baby, we knew little of cystic fibrosis. There was no history of it in either of our families, so we had no way of knowing that we both carried the defective gene.

Joanne's pregnancy had been uneventful, yet we knew something was wrong within minutes of Ella's birth. She had a swollen tummy and, after a day of tests, doctors decided she needed surgery to clear blocked intestines - a classic early sign of CF, although it was a few days before she was actually diagnosed.

As our beautiful new daughter fought to survive such a serious operation, it seemed almost irrelevant. Not any more.

Like countless thousands of other families touched by the disease, our lives are dominated by CF, a condition which causes Ella's body to produce thick, sticky mucus that attacks her digestive system and threatens her lungs with infection.

It's not just the regular hospital check-ups, nor the constant daily regime of medicines and the twice-a-day physiotherapy to keep her lungs clear. Far, far worse is the constant anxiety about her picking up infections.

Sometimes we feel like obsessives, constantly on the look-out for danger. Has that sink been cleaned? Who has used that spoon? Has that person sitting opposite got a cold? Was that a serious cough?

Every instinct is to keep your baby safe. But, however much we want to wrap Ella in cotton wool, there is a limit to how far you can stop a one-year-old sucking, poking, licking and smearing things she shouldn't.

As she grows older and more mobile, it can only become more difficult. But, despite the risks, we want Ella to live as normal a life as possible.

That means allowing, even encouraging, her to mix with other kids and enjoy the experiences every young child deserves and needs.

For now, Ella is doing well. She is gaining weight normally and, like every oneyearold, she can be charming, adventurous, funny and obnoxious - all in the space of a few seconds. With the help of family, we can both pursue careers (me in politics, Joanne in the media) and Ella should be able to attend nursery and school like any other child.

But we know that her condition can only deteriorate. There will come a time when she will find it difficult to breathe and do the sort of activities we take for granted. Hopefully, she will continue to do well. But the hardest thing to cope with is the uncertainty. As she grows older, so the medication will increase, the hospital stays will get longer and the physio sessions will get more arduous.

We try to remain positive. We are helped by some of the inspirational stories of determination and courage shown by other children and adults with CF. Many sufferers go on to college and take up careers. But, with the life expectancy for CF babies being barely 30 years, and with three people dying from it every week, we dread the thought of Ella dying before we do.

That is why we and thousands of other families whose lives are affected by cystic fibrosis cling to the hope that genetic science can produce a cure.

A huge amount of research is already funded by the Cystic Fibrosis Trust. But news that the Government is to contribute £2.5 million to this research over the next three years is a tremendous boost for all of us. A cure would, quite simply, transform our lives. I am therefore perplexed at those who seek to prevent genetic medical science in this area.

We are warned by its opponents that parents will soon be able to choose "designer babies". But the last thing we want is a designer baby.

All we want is for our wonderful daughter to have the same life chances as anyone else.

Gene therapy is, quite simply, our only hope. That Ella is suffering as a result of our flawed genes is a truth we are still coming to terms with - as is the reality that any future baby we may have has a one-in-four chance of suffering from CF.

For now, we try to make our beautiful Ella's life as normal and fulfilling as possible. Just being with her is the best antidote to feeling sad about her condition.

We are helped by the fact that, to the outside world, she looks perfectly fit and healthy. How long that continues, none of us knows. But the determination and spirit she has shown over the past 12 months will help her cope with the challenges of life with CF.

Whatever happens, there is one thing I can say with absolute confidence. It is that our lives have already been enlightened and enhanced by Ella in more ways than I can tell.

For all her problems, that makes me a very lucky man.

The writer is a special adviser to Foreign Secretary Jack Straw.