Kerry Button was devastated when doctors said her baby daughter would probably die when she is about 13.

Hayley Okines is only two years old, but because of a rare disease her body has already aged 16 years. Her pinched nose and tiny face betray her tender years, although she behaves like any other child her age.

The youngster suffers from Hutchinson-Gilford Progeria Syndrome, which means she ages by eight years every 12 months. The condition means she is likely to suffer the kind of problems associated with old age.

By the time she becomes a teenager, she knows she will have more to worry about than her music preferences or boyfriends. Instead, she will be prone to heart problems and stiff joints - problems normally experienced by elderly people.

She is one of just three children alive in Britain to have the incurable condition, which is caused by a mutant gene, and one of only 37 sufferers worldwide. Doctors think she might only live to the age of 13 and her family are hoping to pack as much as they can into the rest of her life.

Her mother, Kerry, said she realised something was wrong with Hayley when she was just a few months old, even though doctors said she was a normal, healthy baby.

She said: "She seemed very sluggish and didn't seem to be putting on weight very fast. Later, I noticed she had lumps either side of her belly button, sort of like a hernia. I kept taking her to the clinic, but they weren't worried and my partner said I was making a mountain out of a molehill. So I decided I was just being an over-anxious mother."

But Kerry decided to get a second opinion after a terrifying ordeal at her home in Jubilee Road, Bexhill, where she lives with her partner, Mark Okines, and his two daughters from a previous marriage, Charlotte, 14, and Stacey, nine. She heard Hayley crying over the baby intercom and found she had been violently sick in her bed.

Kerry, 25, said: "I picked her up and felt that her tummy was really hard. While I was carrying her down the stairs, she suddenly went limp and then started to turn blue. I was absolutely terrified, so I called an ambulance. Even though she was soon discharged and they again said there was nothing wrong, I pushed to have her referred to a paediatrician."

Eventually, Hayley was given an appointment at Guy's Hospital in London, by which time Kerry had noticed her child's skin was becoming shiny and tight. After a series of tests were carried out, including a skin biopsy, the family had to wait six agonising weeks before the hospital confirmed she was suffering from progeria, a disease which only shows up after the first year.

It is difficult to diagnose because it is so rare. Only 100 people have been known to suffer from it since it was discovered in England in 1886 by Dr Jonathan Hutchinson.

The characteristics of the condition are dwarfism, baldness, a pinched nose, a small face and a remarkably similar appearance to other sufferers, regardless of their racial backgrounds.

Kerry said: "They told us the tests showed her skin had no elasticity, like the skin of an old person. I hadn't heard of the disease and I remember staying pretty calm until they broke the news it couldn't be treated. I don't know why, but the first thing I asked was how long she had to live. They said on average about 13 years. I hadn't expected that answer. I thought they would be able to cure it with drugs."

To help them come to terms with Hayley's illness, the family have been to counselling sessions and have made a pact to talk openly about their fears for her future.

Kerry said: "I can't remember anything after being told her life would probably be so short. I cried my eyes out for months and Mark and I would sit up until five in the morning just talking and crying. You can't ever accept that your child is going to die. You just make the best of it. We cram as much as possible into each day so she can lead as full a life as she can. I don't see why she should miss out on anything."

Kerry said it had been difficult for Mark, 38, as he works as a carpenter and cannot spend as much time with Hayley as he would like. She said: "It's awful for him because he lost a daughter through cot death 12 years ago. He's really good, although I know he feels there's pressure on him to be strong for the rest of the family. He would like to stop working because he feels he's missing out on so much of her life, but there are bills to be paid."

The couple plan to have more children in the future, although Kerry said the idea frightened her. She said: "All I've ever wanted is to work with kids and have a big family. I'd be terrified of having another child with the same thing, but the chances of that happening are slim."

At present, Hayley needs no special treatment apart from having a high-calorie milk to keep her strong as she weighs just 20lb, but the family have no idea when her health may start to deteriorate. She is bright and inquisitive and mesmerised by her favourite toy of the moment - a rotating gadget with fibre-optic spikes and flashing lights.

But she recently complained of having pains in her legs and her mother does not know if this is connected to her illness. However, Kerry is determined to stay positive and has set up a trust fund for Hayley in the hope of taking her to Disneyland.

Kerry has had a crew cut to raise money for the fund and the family have been given a computer so they can link up to other sufferers over the Internet. Kerry and Mark plan to get married this year and move to a bigger house. They also want to meet other parents of progeria sufferers, although Kerry knows it will be upsetting.

She said: "I had a letter from a woman whose baby had been born already looking old and then it died within a year. It made me cry it was so sad. "There are no answers. At first I couldn't bear to think about it. But now we just get on with our life and try make make every day as special as possible for our little girl."

Converted for the new archive on 30 June 2000. Some images and formatting may have been lost in the conversion.