The Child Who's Older Than Her Grandmother: Extraordinary People (five): TWO years ago, a documentary introduced us to Hayley, then aged four, who suffers from a rare genetic disease called progeria, which means she's aging eight to ten times faster than the rest of us. Hence the title's reference to being older than her grandmother.

Much has happened since the last programme, not least that she's aged by the equivalent of 20 years.

"Her life is flying by but she lives it to the full," the narrator told us. She certainly seems a happy little girl, despite a body older than her grandmother's that's taking on the features of old age. There are only 40 known cases worldwide

She's been keeping a diary for the film-makers in addition to cameras following her around. As she's growing up and going to school, parents Mark and Kerry are aware that the problems will increase.

James Routh's film avoided seeming like a freak show, exploiting someone's illness for the sake of a good documentary. It had the same emotional pull as the award-winning film The Man Whose Skin Fell Off.

Of course, at the back of your mind was the knowledge that Hayley's life expectancy is short. Her parents have been told that the average age to which sufferers live is 13. The oldest is 22. Mark and Kerry have not told Hayley this, while admitting to themselves: "It's progressive, so she's going to find things more difficult."

She knows she has progeria but not the implications. It can't be much longer before she finds out as she mixes with other children and, as an intelligent child, questions things.

Her family worry about bullying at school and children asking why she doesn't have any hair. At the same time, they suspect she knows more than she's letting on.

Why else would she ask her grandparents to take her to a cemetery during a weekend stay with them? It could have been just curiosity or perhaps children at school have been repeating what their parents have told them about Hayley's illness.

Understandably, her grandmother got a bit tearful talking about Hayley and bathing her. "Her body is older than mine," she said. "I worked in a care home for the elderly and Hayley's body is like the people I used to care for."

The parents have help from a care nurse - "my special friend" as Hayley calls her - and Kerry wanted to introduce her daughter to a children's hospice. Father Mark was resistant at first, but eventually a family outing was arranged. Hayley loved it, without realising the implications of the visit.

Kerry, who has two other children, reported that the gene causing progeria has now been identified. It can be diagnosed from a blood test rather than the year-long process needed in the past. Finding the gene is also good for finding a cure - "but not in Hayley's lifetime", added her mother.

Published: 10/05/2005