Rowing: The inner fight that puts medals in perspective

Winckless chases world and Olympic gold despite the spectre of incurable Huntington's Disease
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The Independent Online

Sometimes you just want to rail at the heavens and curse life's great croupier for spinning the wheel so cruelly. The thought goes through your mind - frequently - as you sit with Sarah Winckless at the Great Britain training base near Reading and listen to the sculler recalling emotionally how she secured an Olympic bronze medal at Athens and listing her aspirations for Beijing.

Or when she reminisces about her father, Bob, and stepfather, Mike Hart, both oarsmen, the latter of whom secured Olympic silver in the double sculls in 1976. And, more immed-iately, when she confirms her desire to claim a gold medal at the rowing World Champion-ships, which begin at Dorney Lake, Eton, on Sunday week.

There is a subtext to her every utterance. Even as she focuses on the gold-medal potential of her quadruple sculling crew, there are foreboding clouds gathering beyond her own horizon.

Winckless is HD positive. She knows now that at some stage she will develop Huntington's Disease, an hereditary disorder of the central nervous system caused by a faulty gene inherited from a parent; in this case her mother Valerie. It is incurable, eventually producing both physical symptoms, including involuntary movements and difficulty in speaking, and emotional ones. It is terminal, although a secondary illness is usually the cause of death. The first signs can appear at the age of 30 or younger. Winckless is 32.

"It's almost a waiting game," she declares. There is an unnerv-ing sense of serenity about her. "It means that, if something else doesn't get me first, I will develop Huntington's, unfortunately. But what they can't tell you is at what stage in your life. Mum developed it probably in her late thirties, early forties. That gives me another eight or nine years before I start getting ill if I was identical to her - but nobody can say."

Winckless, who began rowing at Cambridge University, where she studied chemistry, first took to the water for Great Britain in the women's eight in 1998. She discovered that her forte was sculling, and at the 2004 Olympics won a bronze in the double, with Elise Laverick. Last September, she was a member of the quad crew who ended a splendid year with gold at the World Championships in Japan. This month, after another fine season, Winckless is preparing to repeat that success at Dorney, together with Debbie Flood, Frances Houghton and Katherine Grainger.

The Beijing Olympics in 2008 are the ultimate challenge. "Sport's not a bad career to be in if you have something like this hanging over you," she explains with an extraordinary fatalism. "It is something where it's good to have fairly short-term goals. I did get a text from my boyfriend when London won 2012, saying, 'So, will you be rowing there?' The answer wasn't 'No'. But in reality, you don't look beyond the next hurdle."

It was nine years ago that she had a predictive test after her mother was diagnosed. Initially, Winckless kept the positive result to herself. "It wasn't something I particularly told people about, because I didn't want to be known as 'that girl with Huntington's' rather than 'that girl who's a rower'." Today, she believes that she can help other sufferers by making public her condition.

Winckless, who hails from Reading but now lives in Hurley, near Henley-on-Thames, was in her late teens when she and other members of the family began to notice changes in her mother, who was finally diagnosed with Huntington's in 1996.

"Some people don't last 10 years and, while everyone is different, I really believe that her resilience to the disease comes from her positive attitude," says Winckless. "However, mother is pretty bad now. She is very disabled from the disease. She's in a wheelchair, she finds it very hard to communicate and she doesn't eat any more. We have a tube to feed her. But my stepdad looks after mum amazingly well, and my younger brother and sister, John and Imy [Imogen], have helped with the caring."

Winckless adds: "As a family, it's brought us closer. It's a terrible thing that's happened to my mother, but it hasn't been a terrible thing that's happened to our family, although you wouldn't wish it on anyone."

Winckless is one of four children, each of whom has a 50-50 chance of inheriting the gene. Immediately her mother was diagnosed, she insisted on knowing her own fate. Her elder brother, Charles, based in the United States, has not been tested.

That dilemma - to be blessed or damned by knowledge - is, you suggest to her, one that most people could hardly begin to contemplate. Indeed, there is a considerable programme of counselling beforehand to ensure that someone given a positive result can cope with what is effectively a death sentence without expectation of reprieve.

"It was hard, but in my head, and I still believe this, for me it was no worse to hear that I had the gene than not to know," she says. "And at odds of 50-50...?" she leaves the numbers in the air. She continues: "I have a real 'knowledge is power' kind of faith. I didn't regret finding out, although obviously I wasn't happy with the news. I felt that by being tested, I might hear I didn't have the gene and that would be a good result. I didn't feel I was putting myself in any worse position mentally."

Winckless adds: "Day to day, it doesn't really affect me that much. I think I'd feel very differently if one of my siblings has it, and I would have to watch them go through it. I would be devastated. When it's you, it's quite easy to deal with. You're in control of it."

The only medication available relieves the symptoms, not the cause. She surveys the adjacent water, on which crews are preparing for training routines, and smiles. "They say exercise and a good diet are good, and I've got those ticked."

Winckless works on a part-time consulting basis for a marketing company, but insists: "My ambitions were always in sport. It's my life. To be honest, having kids is a very difficult question because I could pass it on. I don't have too much problem with that, because I truly believe that any child of mine... by that point we're going to have the knowledge to fix it. But it is a tough one.

"My mum had Imy when she was 41, and neither she nor John remember her as being well. I don't want any child of mine not to remember me as healthy. Mind you, it may take care of itself if I keep on rowing."

As she departs to join her crew, you remark on her apparent imperturbability. "If you can't fight it," she retorts swiftly, "there's no point being afraid of it."