AT three years old, Olivia Lamarsh was the size of a nine-month-old baby - due to a rare and deadly disease that is slowly turning her body to crystal.

Her mother Glenda knew there was something wrong, for her apparently healthy baby to suddenly stop growing.

But it took doctors 18 months before they discovered Olivia had a condition that not only stunted her growth, but was slowly turning the cells in her body to rock.

Now aged five, she must adhere to a strict daily regime of medication, starting at 6am, to slow down the affects of the terminal illness.

Olivia is one of just 2,000 people in the world to suffer from cystinosis, a rare metabolic disease that destroys the organs, including the kidneys, liver, eyes, muscles and brain.

But despite the severity of her condition, the brave youngster refuses to let it stand in the way of her childhood.

Olivia started mainstream school in the summer and in her free time she loves going to gymnastics, Girls' Brigade, Zumba dancing and plays football at her local boys' club.

Mrs Lamarsh, 35, from Longside, Aberdeenshire, said: "She just takes everything in her stride. She's so full of life - and very determined.

"We decided very early on that we didn't want to wrap her up in cotton wool and we'd let her do what she wanted, as long as it wasn't going to harm her.

"A lot of people think she's small but they're quite shocked when they find out what is wrong because she looks like a normal little girl."

Olivia is still only about the average height of a three-year-old.

But after being put on the right medication to treat the illness, plus a daily growth hormone, she is slowly catching up on her peers.

Cystinosis is caused by a build up of the amino acid, cystine, in the cells, which causes them to crystallise and die and in turn destroy the body's organs.

In the past the disease would have meant Olivia would have had little chance of surviving into adulthood.

But, with improved treatments and drugs she can take to prolong her life, many sufferers now live well into their 40s.

Mrs Lamarsh and husband Mark, 35, know that Olivia will eventually need a kidney transplant in her late teens or early 20s.

But she said: "The medication she is on helps to slow everything down. But it is not a cure for it."

Cystinosis affects just one in 200,000 births and there are thought to be only around 2,000 people with the disease worldwide.

As it is so rare, research into the disease receives no government funding. Instead, the Cystinosis Foundation relies on donations to fund its work.

Mrs Lamarsh said: "It would just mean everything to us to find a cure."