Driven by a need to help those with learning difficulties – such as her daughter, Annie – Sophie Dow is pushing for a big social shift in the next ten years

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TAKING the road less travelled has always made a difference. Taking to it in a pair of skis, though, seems just a little extreme. But if you have been on the roads east of Edinburgh lately, you may have spotted a man doing exactly that.

• Sophie Dow from Inveresk and her daughter Annie.

Nigel McHollan, 34, a personal trainer from Gullane, is on a mission. In just under three weeks he will travel to Sweden to take part in the Vasaloppet, a 90km cross-country schlep across the tundra that is the oldest, longest and biggest ski race in the world. No matter that he has never skied cross-country before, and that his training is being done not on snowy Scandinavian plains but on the East Lothian Council trunk roads system.

"It seemed something unusual to do," he says. "But the training is a bit challenging. Once a week I go out on my road skis and the other day I managed to do 40 miles on the road. It took me five and a half hours. You get quite a few odd looks and people laughing but I just keep my head down."

The reason McHollan is putting his body through such an extreme workout – cross-country skiers have to be among the fittest in the world because of the amount of strength needed to compete at this level – comes down to the persuasive powers of Sophie Dow, a Swedish woman now based in Edinburgh whose charity, Mindroom, is helping change the perception of children and adults with learning difficulties in Scotland.

For Dow, McHollan's challenge – with which he hopes to raise 9,000 for Mindroom – is the latest in a series of extraordinary events that have led her to her current position: giving a voice to thousands of Scots with learning difficulties, including her own daughter, Annie.

Annie Dow was born in 1991. A beautiful baby with ten fingers, ten toes and seemingly the perfect weight and height, Dow says that she nevertheless knew there was something wrong with her daughter.

"The mother instinct kicked in immediately," says Dow in her lilting accent. "I knew intuitively that something wasn't quite right. It was as if her spirit wasn't in this world. Her body was there but her spirit hadn't followed just yet. I think it took about two weeks before I felt that she was 'present'. And then, she was slow. She was a very, very late developer. But because I didn't have much to compare it with (Dow and her husband Robin have another son, Jamie, and Robin has a daughter from another marriage], I just gave her the benefit of the doubt all the time. And that kept going for about three years."

At the time the Dows were living in London where Robin, a Scot, was an investor and former president of Levi Strauss Europe and Dow a well-respected film journalist, moving in glamorous London film circles. When the couple sold their Hampstead home, it was bought by the late film director, Anthony Minghella. He later used Dow as the inspiration for his final film, Breaking and Entering, which is about a Swedish journalist, played by Robin Wright Penn, who was the mother of a child with learning difficulties.

Finally, spurred into action by a friend, Dow asked a child psychologist to come to their house and assess Annie.

"After three hours, he said, 'Well Mrs Dow, you've got a problem. You're daughter is mentally handicapped.' There is just no way you can assimilate information like that on the spot. So I said to him, 'Thank you so much for coming, what a beautiful day it is today and where did you get that briefcase from?'"

Shattered, Dow and her husband went out that night to a friend's 50th birthday party in a building opposite the Tower of London. "We just stood at the side of the party completely dumbstruck. We drank way too much Champagne and threw out questions like what does it really mean? Will she be able to go to school? Is there some amazing oracle in China who can help Annie? What will happen to her when we die? How on earth did we end up in this situation?"

Six months later the Dows moved to Edinburgh. Dow was frustrated with the vague diagnosis, and took Annie to the Sick Kids hospital in Edinburgh, where it took two "lost years", as Dow puts it, for a further diagnosis of brain damage during pregnancy. Meanwhile, she was doing some investigating of her own.

"You start out blind," she says. "There was nobody to help us and provide us with the information and tools with which we could go forward. The emotional burden on the parents is huge." Using her journalistic research skills Dow came across a Swedish professor of child and adolescent psychiatry named Christopher Gillberg, who had examined the extent of the issues surrounding learning difficulties in today's society, describing it as a "big public health problem". When Dow discovered he was giving a conference in Gothenburg, she jumped on a plane.

Dow recalls: "I spent two days sitting and listening to all kinds of depressing statistics about suicide and drug abuse but, at the same time, there were 2,700 delegates and I thought, 'Wow, I'm not alone.'"

It was while sitting in that Swedish conference centre that the idea of Mindroom was first born. Stuck on the wall of her study, she still has the mission statement she scrawled down during those two days. "I wrote that if I was going to do something it had to have hope, recognition, practical solutions and humour. Because you have to turn it into a positive. I came home and said to Robin, 'I have this vision and idea about how to change the world.'"

Mindroom was founded in 2001, its mission to rectify society's own learning difficulty, as Dow puts it, towards people with special needs. In 2003 Mindroom held its first major conference in Edinburgh, where Dow lured 17 world experts in the field to speak in Edinburgh through sheer force of will and the promise of free whisky.

Since then the charity has grown in leaps and bounds, setting up a summer camp for children with learning difficulties, offering direct help and support to thousands of families and raising awareness through lobbying and research, including a report presented to the Scottish Parliament in 2008.

"The understanding of the brain and the mind is so young," she says. "And we're only just now beginning to understand that if we don't do something about this now it will become one of the big public health problems of our time. At least five children in every class have some form of learning difficulty."

Meanwhile, Dow has continued to unravel what she describes as the "genetic detective novel" that is her own daughter's mind. In 2003 she asked Gillberg to have a look at Annie, who suggested she take her to a geneticist. Annie was tested for a genetic condition called Catch 22, but the tests came back negative.

The geneticist told the family he would keep Annie's blood sample and wait for better technology. Four years later, a brown envelope arrived. "We opened the letter and it said, 'Dear Sophie and Robin, I now have a high-resolution microscope, I have screened Annie's blood sample and she has a small but significant chromosome deletion.'"

The geneticist revealed that Annie is missing 21 genes on the upper arm of Chromosome 1. She is the only person in the world to be discovered with this particular chromosome deletion. The next challenge, says Dow, is to look at what those 21 genes would have contributed if they had been there.

Today, Annie is a happy 19-year-old at college. "She can't really read or write, she has no concept of time, but she's very sociable, and has a very high emotional intelligence," says Dow. "She still plays with Barbies, and she loves Mamma Mia, which we have now seen 255,000 times. She is a teenager – she uses MSN and things like that – but she's completely clueless when it comes to danger and consequences in the world. She will never be able to live independently but she's great fun and great company."

Meanwhile, Dow has big plans for the future. Mindroom is pushing towards its 2020 Vision: to create such awareness that by the year 2020 all children and adults in this country with learning difficulties will receive the recognition and help they need. Then there is the charity's next conference in 2011, entitled No Mind Left Behind. She is also writing a book about her experiences "walking alongside Annie through life", and has a goal of one day establishing an architect-designed building that can act as an inspiring one-stop-shop for learning difficulties.

Her energy seems limitless. She declares that the possibility of her own death is "just not on" when pondering her daughter's future, and is utterly dedicated to her cause.

"Stigma is the one rationale I would like to change the most," she says. "We are all different. We all have our own individual neurological make-up. We only know 20 per cent of the brain, and we understand only 10 per cent. And if that's the case, nobody has the right to exclude anybody from anything in society, because we know nothing."

For Dow too, it seems, taking the road less travelled has made all the difference.