A LITTLE girl with a rare genetic condition is raising awareness of children’s genetic disorders this week.

Imogen Green, who lives in East Wichel with parents Stacey and Nigel, will don her denim this Friday in aid of UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day.

Five-year-old Imogen, who attends Westlea Primary School has Myhre syndrome, a disorder so rare that when she was diagnosed as a toddler she was the only known sufferer in the UK.

To give Imogen the best chance of a healthy and normal life Stacey and Nigel researched the condition, set up a website and Facebook group and have since connected with parents in Australia, America, France and Belgium.They are also in regular contact with the lead expert on Myhre Syndrome,

“Jeans For Genes is so important because the research they do enables us to learn more about the condition,” said Stacey.

“When Imogen was diagnosed it was very confusing and we want to find out as much as we can about Myhre Syndrome. They’re not only helping Imogen but so many others.”

At birth Imogen was not breathing. She was also unable to open one eye. As a baby Imogen was found to have a twisted spine and a heart murmur. She also had issues feeding and putting on weight.

After Imogen was referred to a geneticist, a battery of tests revealed she had Myhre syndrome. It is caused by mutations in the SMAD4 gene and leads to developmental delay. Other symptoms include short stature, unusual facial features, bone abnormalities, hearing impairment, congenital heart defects, joint stiffness, and narrowing of the voice box and windpipe.There are only 50-55 known cases of Myhre Syndrome worldwide.

“I cried when I found out,” said Stacey, “I had never heard of it and there was confusion, all we knew is that it was progressive.”

Despite her health challenges, Stacey said Imogen remains a happy-go-lucky and bubbly girl who loves Disney films.

“Imogen has to wear a Dynamic Movement suit which supports and straightens her spine, as well as leg splints, glasses and hearing aids” said Stacey

“At the moment she has delayed learning but it’s not significant. Also, because she is so young, a lot of learning is play based so it won’t be until year one when they have to do more work.”

“Her joints are really tight and stiff and she permanently walks on her tip toes. Her condition is very much like arthritis, she gets very tight and sore and can’t move. But Sse’s happy, she’s hyper, she’s always on the go. She doesn’t let anything hold her back and we are both so proud of her.”

This year, Jeans for Genes Day is on Friday September 23 and invites everyone to wear their jeans to work or school in return for a donation Visit www.jeansforgenesday.org