Lily raises awareness in jeans

Justin Bieber fan Lily (4) is one of only two people in Scotland to be diagnosed with Pura Syndrome - a rare genetic disorder discovered two years ago.

The syndrome means Lily can’t speak and is in a wheelchair although can walk with help. She also tires very easily and can get overexcited.

Pura Syndrome is associated with developmental delay, learning disabilities, seizure like movements and feeding difficulties.

Now Lily and her family are encouraging everyone to wear their jeans to work, school or college on Friday in return for a donation to the charity Genetic Disorders UK through the fun annual fundraising day.

Lily was diagnosed with the syndrome a few months ago. Her parents, Andy and Emma, had been trying to find out what had been causing her problems since she was 18 months old.

Andy said: “Doctors just didn’t know where to turn. All the tests she took came back negative and, at one time, she had five sets of different notes from different doctors. Nobody knew what was going on so they came together and put Lily forward for the Deciphering Developmental Disorders study which looks for developmental disorders. They warned us the study may take years to come up with any results if any so we were quite glad when they called and told us they found a diagnosis.

“The syndrome was only discovered in 2014 and, up until now there’s only 65 cases worldwide.”

Visit www.jeansforgenesday.org.