A SEVEN-year-old girl's genetic disorder is so rare her family are fighting to find out more.

Sophia O’Malley, who attends Millwood Primary Special School in Radcliffe, is one of just a handful of children in the world to suffer from Myhre Syndrome, a condition associated with learning difficulties and growth deficiencies.

She was diagnosed in December 2012, two years after taking part in a medical study, and the more her family finds out about the disease, the more problems they uncover.

Mum Eileen was recently put in touch with a small support group, which includes two other children in the UK and eight in America, and is desperate to learn more about her daughter’s condition.

The 38-year-old, of Ivy Road, Bury, said: “When Sophia was first diagnosed she was the only child in the UK with Myhre syndrome, and there were only a few people in the world that we knew of.

“It’s really frustrating and difficult for us all to cope with when there is so little information out there about what to expect and how best to help.

“Since we joined this group a few months ago, we have been able to come across more research that has been done, which tells us that this is a progressive disease.

“There needs to be more research carried out into this disorder because the more we find out about it, the more complications we discover that are associated with it.”

The research Eileen has found since joining the support group has revealed common problems with the heart and bowels, with two other children in the group having died recently as a result of failed heart transplants.

Sophia’s bowels have been a concern since birth, and she needed an operation when she was just five days old as her small bowel had not properly developed.

Sophia has very poor eyesight and needs and also wears dual hearing aids for moderate hearing loss. She is unlikely to grow above four feet in height, is not yet able to read or write, and her intellect is comparable to a three-year-old.

She attended mainstream school for two years before joining Millwood last September and is now thriving.

Eileen added: “Sophia is absolutely fantastic. She is such a happy and caring child, as are all of the children who we know with Myhre syndrome. But she is also really stubborn and determined.

“Millwood have been absolutely wonderful with her. It’s a brilliant place and she settled in there so well. She loves it there.”

In an effort to help other families affected by Myhre Syndrome, Eileen, who also has a 15-year-old son Jake, is planning to join with other families to form an awareness network in the UK.

They are due to meet with a family from Swindon whose daughter, Imogen, also suffers from the condition.

Eileen said: “We are really excited to meet Imogen and we are planning to take the girls to Disney on Ice together in Manchester. We want to come together and set up an awareness group so that other families can contact us, because we know how difficult it can be to try and find support for such a rare disorder.”