Last week, Sarah Winckless received the news for which she had been desperately hoping. She has been selected to row for Great Britain in the 2004 Olympic Games in Athens. To the unsuspecting, Sarah is a beautiful and healthy young woman with an athletic build. She has a Cambridge education and a remarkable passion for life. But Sarah has also tested positive for Huntington’s Disease – a disorder that could attack her central nervous system at any time, gradually destroying co-ordination, speech and movement. Here, 31-year old Sarah tells Cathy Wood her story:

"Every sports enthusiast remembers the day that Sir Steven Redgrave won his 5^th Olympic rowing gold medal. Especially me. I was there, on the Sydney rowing lake where the race was taking place, sitting next to my mum Valerie, having just finished 9^th in the double scull rowing in my very first Olympic Games.

The toll of travelling halfway around the world just to be there to watch me was beginning to tell. Mum’s speech had deteriorated, her walking was unsteady and she was tired from the enormous effort of getting around as independently as she could.

And yet, as she waved her Great Britain flag excitedly, I knew this, rather than the race unfolding in front of us, was a moment to savour.

The reason is that Mum has Huntington’s - a disorder of the central nervous system, which gradually destroys co-ordination, control, speech and movement. So my Olympic effort was nothing compared to hers.

I also knew the disease had already left its mark on me. Huntington’s is hereditary, caused by a faulty gene being passed from generation to generation - which means that every child of a sufferer has a 50% probability of having the faulty gene too.

Looking back, it is clear that my grandfather also had Huntington’s though when he died there wasn’t a test to identify the disease.

In 1996, when I was 23, I took a test to find out if I have the faulty gene - and I too am positive. Anyone who inherits the gene will, at some stage, develop the disease, although no-one knows when.

It was 10 years or more before that scene in Sydney 2000 when Mum’s symptoms first became apparent. My parents divorced when I was 6 and Charles, my brother, was 7. Mum married Mike and together they had two more children, John, now 22, and Imogen (known as Imy) who is 19.

Years later, our neighbours in Kingston-upon-Thames, Surrey, would tell of the things they noticed that didn’t quite make sense, such as Mum’s forgetfulness or her tendency towards involuntary facial twitching.

She also developed an obsession for shopping, buying Imy new outfits almost every day. Such obsessive compulsions, we later learned, are common among Huntington’s sufferers.

Of course, Imy thought it was fabulous. The rest of us knew something wasn’t quite right, but we didn’t know what. And any suggestion to visit the doctor would be met with defensiveness. Mum was fiercely protective of her independence.

It is hard to know how much Mum realised what was wrong with her, but I remember when I was young she used to say ‘I don’t have Huntington’s’, which we thought strange because we didn’t know anything about what the name meant.

Coincidentally, Mum worked as lab assistant for the scientist who identified the Huntington’s gene, so she must have had a great knowledge of the condition before getting the test.

By my early teens, I was caring a lot for my siblings - but even then I put it down to my mother’s lack of maternal instinct rather than anything more sinister. Besides. Mum’s idiosyncrasies always had a funny side to them.

I moved to Millfield in Somerset for my last two school years, and one day Mum rang up and said ‘What’s the answer to question 42?’ to which I said ‘Mum, what’s the question?’

On one occasion when a doctor suggested some tests, Mum’s response was simple yet defiant. She changed surgeries. She seemed happy, so we let her get on with things.

But slowly the situation did get worse. She made no concession to the illness, and one of us would get a phone call from Kingston casualty department saying Mum had fallen down some steps in town and cracked her head open. These instances became more and more frequent, until eventually she wasn’t able to get out. By then I’d moved out, so it was left to John and Imy to pick up the pieces.

Then one day, when I visited, she hugged me and told me she had been diagnosed with Huntington’s Disease. A specialist had persuaded her to take a genetic blood test.

It was the first time her illness had been given a name and, in a way, just having a label was a relief. It meant I could read up about it, understand it and, having read science at Cambridge, rationalise it.

Whilst realising what was ahead for Mum, I also understood that due to the hereditary nature of Huntington’s, my two brothers, my sister and I were each at risk.

Mum said straightaway that she wasn’t going to let it ‘get her’. And it hasn’t. She does as much as she can for as long as she can, and always has. She is now 61 and her condition is deteriorating, but she still lives with her husband and my sister at home.

At first, convinced the mercury in her mouth had poisoned her, Mum had all her metal fillings replaced with white ones and for a while she followed a strict homeopathic diet.

At the moment she takes no drugs at all. There are some conventional drugs available, and in some cases they can help to mask the symptoms but Mum wasn’t interested in taking that route.

I think her positive approach has helped us learn to live with Huntington’s rather than fear it. Mum does find it difficult to get food down and I find it harder to understand her speech, but the thing I admire most is her refusal to give up. She’s only started using a wheelchair recently, and even that she fought.

At 61 she’s quite disabled, but when my father Bob re-married, he held a party in Vienna and Mum went along. It was me who spent most of the evening in the wheelchair as she partied the night away.

We’re at a stage now where we need carers to help look after her, but there’s still recognition and enthusiasm for her visitors. She can’t be on her own any more, but you can come into a room and her face will still light up.

She often now greets me with ‘Sarah Rowing’. She likes to touch - to feel she is communicating with you in a physical way even if she can’t speak. I think her attitude helped me make my decision to have the test. As a scientist, I believe knowledge is power, and, as I already knew I was ‘at risk’, I couldn’t see how taking the test could make me any worse off.

I’m also one of those people who need to face things front on, to know what I am dealing with, so I went to Addenbrooke’s in Cambridge, where they have a centre dedicated to neurological conditions.

First, the doctors measure how your brain is working by asking questions like how many animals can you name beginning with A. It’s really to see how your brain files things and what your recall is like. In years to come, they can look back and see if there has been any deterioration. But the real test involves taking blood to see if you have the faulty gene.

When I was told the results, I was very calm. It wasn’t until I’d had a chance to think it through about a week later, that in floods of tears I 'phoned the counsellor who had dealt with me.

After that, I just threw myself into things - doing my finals, buying a house and rowing. Only then did I allow myself to think what it means to me, my future relationships and having kids.

I’m 30 now, unmarried and haven’t had children - I’m training for the Olympics and I have other priorities. Since 1996, my life has gone in four-year cycles. Now Athens is only 9 weeks away and I can’t think about my future beyond that, although I can’t pretend Huntington’s doesn’t sometimes pop into my head.

It is not so much passing on the gene that worries me, because I believe that in 20 years time science will have found a treatment. But I am worried about being unable to care for my children. Neither John nor Imy can remember a time when Mum was well — and the later I leave having children, the greater the risk that my children’s experience will be the same.

With Huntington’s, there’s no guarantee about age of onset. I know I’m fine now because I’m performing at this level - the very nature of Huntington’s is that it affects co-ordination, so I know it hasn’t started.

I can’t fight it, so there’s no point in fearing it. If it happens, it happens. I’m going to live my life and get on with it. The more positive I can be the better. That’s what Mum has shown.

Some people don’t last 10 years, and while every person is different, I really believe part of Mum’s resilience to the disease is her positive attitude and the fact that she keeps going.

For now, the only thing that matters is devoting my energies to fulfilling my potential on the water in Athens.

Mum, although confined to a wheelchair, is coming too. She’s incredibly excited, even though she finds it hard to express herself. And if I do win a medal, she’ll be the first person I give it to. She’s done her bit. Now I’ve got to do mine."