The 12-year-old, who has Down syndrome, suffers from severe aspiration which means any liquid could be lethal.

As well as restricting what she can eat and drink, the unusual condition means the outgoing little girl cannot take showers, enjoy a splash at the swimming pool and has to take care when going out in the rain.

"If Kiara drinks any fluid it will go into her lungs rather than her tummy," Kiara's mother Vanessa said.

"Many people have experienced the feeling of something 'going down the wrong way' and they'll cough and splutter until it comes back up.

"For Kiara, that's what happens every time - but if she drinks water or fizzy drink it will go into her lungs and she will get very unwell and it could kill her.

"We've nearly lost her five times due to it and are quite frightened by it."

To keep their daughter hydrated, Vanessa and husband Sam have to thicken liquids which they feed to her slowly through a straw. Meals, too, can be hard, as Kiara cannot tolerate any food with a high water content.

"Any liquid she has has to be as thick as honey so we have to thicken nectar juice or cordial with a baby formula food thickener," Mrs Risku said.

"And she can't have any food that turns to fluid - like watermelon, orange or cucumber; jelly or custard."

Kiara has to take baths instead of showers and washing her hair can be tough as it's imperative to keep water away from her mouth.

The family keeps trips to the beach or swimming pools - or going outside in wet weather - to a minimum due to the strict supervision needed to ensure she's not splashed in the face.

"Kiara understands she can't have liquid but she doesn't understand it can kill her," Mrs Risku said.

Despite the challenges Kiara faces, Mrs Risku said she remained a bubbly and happy little girl.

Born premature at 32 weeks, she had to undergo stomach and bowel surgery, meningitis and open-heart surgery in her first two months of life.

She's had pneumonia 60 times, 15 collapsed lungs, numerous hospitalisations and 30 operations.

She also has hydrocephalus (fluid on the brain) and a routine scan last September uncovered a rare brain tumour and her parents were told she would not last till Christmas.

However, after surgery to remove the tumour Kiara continues to prove doctors wrong.

The family has the support of the KidzWish Foundation, with Kiara an ambassador for the children's charity.