She leads the sort of lifestyle most little girls only dream of.

She jets off on several exotic family holidays each year, has backstage passes to pop concerts, takes rides in a limousine, goes to awards ceremonies and rubs shoulders with Prince Charles and Kylie Minogue.

She is lavished with love and presents at Christmas and birthdays and wants for nothing.

But despite the glitz and glamour, there are not many girls who would offer to swap places with young Hayley Okines.

Little Hayley is not a princess, a wealthy heiress or a child prodigy but a seven-year-old girl from Bexhill who suffers from a very rare ageing condition.

She is one of only 40 known sufferers of Progeria, a genetic disorder that causes her to age eight times faster than normal children.

The average life expectancy of Progeria children is 13 and Hayley's parents Mark and Kerry do their best to make her life is as special as possible.

That is especially true at this time of year.

Student nurse Kerry says: "We think, 'How many more birthdays and Christmases are we going to have with her?'

"So we try to make Christmas special but it is quite emotional for us.

"We have learnt to hide that but our extended family members can get quite upset. Hayley is shielded from all that."

The physical effects of Progeria are striking.

Hayley is totally bald, a map of blue veins is visible through her paper-thin skin and she doesn't have an ounce of body fat.

She also has the distinctive facial features and large skull developed by most sufferers.

Hayley is tiny and weighs a stone and a half, less than her two-year-old brother Louis.

The condition's ageing effect on her joints and bones is also becoming apparent.

Kerry says: "Hayley had no movement restrictions two years ago but now they are beginning to creep in.

"She struggles to bend down and put her shoes on or pick things up.

"She sometimes needs help putting clothes on and has got good at taking her socks off using her feet.

"She also suffers from a bit of pain but that does not stop her running around like a lunatic half the time."

The disease has done nothing to suppress Hayley's high-spirited and fun-loving personality.

Her cheeky smile and ebullient nature have made her a nationally-recognised symbol of courage and attracted much-needed publicity and funds for the little-known condition.

Hayley was launched into the national spotlight after winning several children of courage awards and featuring in a Channel Five documentary.

And she clearly relishes the trappings of fame.

Mark, 43, a house husband, says: "We have been invited to film premieres and we recently went up to Stamford Bridge by limousine to watch Chelsea against Porto.

"Afterwards, Hayley met some of the players and Kylie Minogue, who remembered Hayley from meeting her before.

"Brian McFadden was also there and hit it off with her."

Kerry says: "She knows she stands out and she loves it.

"It has made her very confident and we are very pleased because she could just as easily be withdrawn because she is so different from other children.

"Mark and I both say the day she does not want to do these things it will stop but she does not want it to.

"It carries her though a lot.

"She has never had major bullying problems at her school, Sidley Primary, because she is too likeable.

"She's quite a little star there."

Hayley is also very close to her brother Louis and sisters Stacey, 14 and Charlotte, 19.

The family has close links with other Progeria children through an organisation called the Sunshine Foundation and have attended reunions in Florida and Germany.

Kerry says: "The family would never have been able to travel like we have or had the opportunities we have had without Hayley.

"We want to do it while Hayley is still capable and pack a full lifetime of experiences into however long she is with us."

As well as providing support for families, the foundation raises cash for medical research and Kerry is hopeful a cure will be found.

She says: "Hayley was diagnosed when she was two but they can now detect the condition much earlier through blood tests.

"It took four years to identify the gene and that is very quick in terms of medical research.

"We have devoted our lives to make sure the time we have with her is special."

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