As Edward zooms his train around the sitting room at his parents' terraced house, he seems no different from any other three-year-old boy. True, his hair is very blond, but other children have white-blond hair too. And he wears glasses, but that's not unusual either.

Edward, though, was born with albinism, inherited from his parents. "I never want Edward to think he's just his disability," says his mother, Lorna Stacey, 43. "That's why I hate the term 'albino'. It describes someone as their condition but Edward is so much more than that. I want him to grow up using the support that's available so he can do most of what he wants in life."

Like his parents, Edward has unusually pale skin that blisters easily in the sun. He also has visual difficulties common to people with albinism, which mean he'll probably never be able to drive, for example. Lorna is registered partially sighted while Edward's father, Mark Sanderson, 44, has severe visual impairment.

The couple, who live near Reading, Berkshire, met through the support group Albinism Fellowship and talked at length before deciding to have a baby. Mark's initial worries weren't so much about passing albinism on, but concerned the practical difficulties. "I'm very mobile but getting to places without a car has its frustrations," he says. "And you have to work harder as a visually impaired person just in everyday life. I was anxious about the impact on us of being parents and the perceptions of other people."

However, Lorna persuaded Mark to have genetic counselling. No one else in their families has albinism – she has two sisters and Mark has a brother – but both sets of parents carry the recessive gene. "We discovered we had the same type of albinism – we knew before Edward was born that he'd have it too," says Lorna. "But I realised while we were going through counselling that I didn't really care whether my baby had anything wrong – it was more important to be a family. Luckily, in the end Mark agreed."

Now they can't imagine life without their son, who is full of energy and already seems far more confident than they were at his age. Lorna says he's very good at getting to the front of class at nursery school so he can see what's going on, and isn't embarrassed to hold things up close so he can focus properly. "The world's so different now for people with albinism," she says. "There's more support and understanding of the condition and better technology to help."

She remembers unsympathetic classroom teachers who made her feel stupid when she couldn't read the blackboard or catch balls in PE, or find her clothes after a swimming lesson. She hated standing out from the crowd and loathed being smothered in sun cream and having to stay covered up on the beach. As a teenager she became even more self-conscious and developed an eating disorder which she now believes was linked to her condition and lack of self-esteem.

Mark went to a special school where he feels he wasn't pushed academically. He was discouraged from taking part in sports, too, because they were considered dangerous. "Children with albinism are diagnosed earlier now and their needs are identified earlier. They get better support and opportunities and attitudes are generally better."

Throughout history, people with albinism have been portrayed as weird, freaky and sometimes evil. In parts of Africa, where albinism is more common, myths still hold sway and children have been killed for their body parts to be used by witch doctors.

Negative images are still common in Europe and the US. Lorna was disappointed by the character Albino Pirate in the recent children's animated film The Pirates! In an Adventure with Scientists because of his exaggerated whiteness and constant bewilderment and confusion. "I went along to check the film out. I wouldn't take Edward as it might really upset him."

Through his work with the Albinism Fellowship (which he chairs) Mark takes every opportunity to correct such negative images. He worked closely with the make-up designer on The Da Vinci Code film, for instance, to make the monk-assassin Silas, who has albinism, look authentic. "You can have no influence over the character but if they are going to portray someone with albinism at least they can make them look right and not over-emphasise their features. Because it's so rare – one in 17-22,000 people in the UK have it – people still think it's OK to peddle negative stereotypes."

Mark, who works for the charity Leonard Cheshire Disability, speaks in measured, thoughtful tones, but you sense deep hurt beneath the surface. "I do get the odd unhelpful stare or name-calling," he admits. "It makes me uncomfortable, anxious and upset and I'm aware of my shoulders going up. I feel as if the eyes of the world are on me. I had a tough time as a young adult when I felt low about things and I feel protective towards Edward. I want him to grow up with a more positive self-image."

Mark is particularly aware of looks from other people when they all go out together. "We're a family with albinism and we have a visual distinctiveness. You can't get away from that."

He and Edward find it helpful to wear hats to reduce the glare, so Lorna makes a point of going without. "We're not going to look like the hat family."

She finds it extraordinary now to think she didn't meet another person with albinism until she was 26. Her parents, though supportive, took the view that you just got on with things. When Lorna found out about the Albinism Fellowship and went along to her first meeting, it was a revelation. "It was wonderful, such an emotional experience. I just wanted to stare at everyone and study their features. I met a woman of about the same age whose experiences had been similar to mine and began to realise my difficulties hadn't been because of me, but because of my difference and other people's reactions to it.

"I also realised the way to get on with life was to accept my condition and get help, not try to pretend my albinism wasn't there."

Lorna registered as partially sighted. This enabled her to get support such as screen magnification software, which made life much easier. With a new confidence she reapplied to university, having dropped out some years before, and graduated with a first-class degree. "Studying was such a different experience second time round. I had something to record lectures with, an allowance for photocopying and tutors gave me copies of notes which took the pressure off. This time I was determined to succeed."

As yet, Edward isn't aware of his condition. Recently he asked Lorna why there was a photograph of her in a leaflet about albinism. "I said, 'Mummy has albinism and you do too – that's why I have blond hair and need to look at things close-up.' But he wasn't having any of it."

When he's older, Lorna says she'll take Edward to Fellowship events as she would like him to know other children with the condition.

Mark acknowledges that life will be harder for Edward than it is for many children but hopes that his and Lorna's experience will help him to deal with whatever comes his way.

"I wouldn't change my little boy for the world. If I could take the albinism away I would, but only to make it easier for him. I have no regrets about having a child – ever."

Further information: albinism.org.uk