A LITTLE girl with a disorder so rare doctors called it Syndrome Without A Name has finally been diagnosed at the age of four.
Lily Dodds’s condition was only identified 18 months ago and it affects just 64 children worldwide.
Her parents Andy and Emma first contacted doctors when they noticed their daughter was sleeping more than 20 hours a day and seemed “floppy”, with little sign of muscle tone.
But medics in three hospitals were unable to explain what was causing her symptoms after numerous tests drew a blank.
They finally discovered the cause of Lily’s illness when a child in Australia was diagnosed with Pura Syndrome in 2014.
Lily’s parents then agreed to take part in a clinical study involving DNA,
which pinpointed their daughter also had the syndrome.
She is one of only two children in Scotland and 12 in the UK with the condition.
The little-known disease is a genetic disorder that can cause seizures, low muscle tone, breathing problems, eyesight 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, for children with special needs, and will go to Redburn School in August.
Her family say she is “thriving” after receiving great care from doctors and nursery staff.
Mr Dodds, 34, who works for SSE, said: “It sounds bad but it was a real relief to finally get that diagnosis.
“Before that, tests were run and didn’t provide answers. When we got the diagnosis, it was like a weight lifted off our shoulders.”
He said his daughter had come on “leaps and bounds” since her diagnosis.
“She has received so much support,” he said. “In fact, I would say Lily is thriving.
The couple are now part of a worldwide support network where they can chat online with parents of children who have the condition.
Mr Dodds is also a member of the Pura Syndrome Board which aims to raise both awareness and money for those affected.
They still do not know what future Lily will have.
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