A LITTLE girl with a disorder so rare doctors called it Syndrome Without a Name has finally been diagnosed at the age of four.

The illness affecting Lily Dodds was only identified 18 months ago and affects just 64 children worldwide.

Her worried parents Andy and Emma first contacted doctors when they noticed their daughter was sleeping in excess of 20 hours a day and seemed "floppy", with little sign of muscle tone.

Medics in two Glasgow hospitals plus Wishaw General, North Lanarkshire, were unable to explain what was causing her symptoms, after numerous tests drew a blank.

But finally they discovered the cause of Lily's illness when a child in Australia was diagnosed with Pura Syndrome in 2014.

Lily's parents agreed to then take part in a clinical study involving DNA, which pinpointed that their daughter also had the syndrome.

She is one of only two children in Scotland with the condition and one of just 12 in the UK.

The little-known disease is a genetic disorder which can cause seizures, low muscle tone, breathing problems, eye sight issues and conditions with the bones.

Lily is unable to speak but can walk and hold hands with her parents.

She currently goes to the nursery at Baird Primary School in Cumbernauld, which caters for children with special needs, and will go to Redburn, another special needs school, in August.

And her family say she is "thriving" after receiving great care from doctors and nursery staff.

Dad Andy, 34, who works for SSE, said: "Lily has come on leaps and bounds.

"She has received so much support and obviously knows everyone so we want her to go to Redburn.

"We are really optimistic about this. In fact, I would say Lily is thriving."

Andy and Emma, 32, are now also part of a worldwide support network where they can chat online with parents of children in Australia, USA, Serbia and Israel who have the condition.

And Andy is now a member of the Pura Syndrome Board which aims to increase both awareness and cash for those affected.

He said: "I wanted to get involved so these children have some sort of legacy."

But he admitted the past few years have been rough as their daughter was taken round different hospitals, talking to various consultants who were unable to pinpoint what was wrong.

The diagnosis finally came in November and since then the couple have been able to start figuring out the best way to look after their daughter.

He said: "It sound bad but it was a real relief to finally get that diagnosis.

"Before that, tests were run and didn't provide answers.

"In Lily's case, it was identifying the syndrome and providing our DNA for a study that finally cracked it."