Holly Paine, 17, suffers a rare condition which makes her look years younger.

With her blonde hair and tiny frame, Holly Paine she looks like a ten-year-old.

Holly is the only sufferer of cystinosis in Sussex and one of just 100 people in the UK.

It has been nicknamed the "blonde hair, blue eyed" syndrome as most sufferers are born like that and keep their young appearance for the rest of their lives.

Holly said: "People with the disease are like clones. They all look the same. Wherever I go people make comments and it is something I have had to put up with my whole life.

"But it hasn't stopped me from living life to the full and it never will."

As the disease is so rare, doctors did not diagnose Holly until she was 18 months old.

Her parents Sue and Richard were frantic with worry as Holly was nearly two but was the same size as an eight-month-old baby.

Sue said: "She was born perfectly healthy but developed an extreme thirst, was constantly irritable and was always going to the toilet.

"We were fobbed off for months by the doctors. I called it the neurotic mother syndrome, as they would not believe a word I said. They said she had flu, then a stomach bug and then a virus.

"She had completely stopped growing. She couldn't sit properly, roll over or stand up. When we were told she had cystinosis and the disease was terminal, it was like there had been a death.

"You grieve because all you wanted - and felt you deserved - was a normal, healthy baby."

Sufferers possess too much cystine, an amino acid. Cystinosis occurs when the mechanism, which removes excess cystine breaks down. It then accumulates within body cells preventing them from functioning correctly.

It initially affects the kidneys and progresses to the heart, liver and other organs. Sufferers have impaired growth and crystals form in their eyes.

Holly, from New Way Lane, Hurstpierpoint, also suffered from rickets, a bone deficiency disease, and was on a large amount of medication from a young age.

Holly, who attended Albourne Primary School and then went on to Downlands Comprehensive School, Hassocks, said: "I was lucky at school as my teachers and friends rallied around me."

Sue said: "She was asked her age by some of the boys.

"She would get pushed around. But she learnt to stand up for herself."

Holly is only 4ft 9in and has not been through puberty.

Her only hope was a new kidney. After a three-month wait, she had a successful transplant in March 1999.

Along with steroid treatment, it allowed Holly to develop with the rest of her schoolmates, although she will never lose her youthful look.

After passing all her GCSEs, Holly is halfway through a National Diploma in Media and works at a bakery.

She said: "I'm still in the nine to ten age group for clothes.

"I have problems when I go out and have to carry my passport everywhere.

"I have been lucky and had quite a few boyfriends. I will never let the disease defeat me - I've got a life to lead."

Holly and her parents are not sure how long she has left to live.

The oldest sufferer is Jonathan Terry, 39, who is also the founder of the Cystinosis Foundation.

Sue said: "Holly will never take anything for granted."