THE mum of a seven-year-old diagnosed with a rare genetic disorder is hoping to use the new year to set up a charity dedicated to helping families combat the condition.

Sophia O’Malley, who attends Millwood Primary Special School in Radcliffe, suffers from Myhre Syndrome, which is associated with learning difficulties and growth deficiencies.

Mum Eileen has been desperate to find out more about the condition since her daughter was diagnosed in 2012 and is now joining other parents to provide support.

The 38-year-old, of Ivy Road, Bury, said: “I first found this small support group earlier this year and we have now met up with a family from Swinton whose little girl suffers from Myhre Syndrome too.

“Me and Stacey, the girl’s mum, have this Facebook group that we have set up for people to join and we are hopefully going to be starting a charity soon.

“That is the next step for us and something we are hoping to sort out in January. We know now that it is a progressive disease and is a bit more serious than we first realised.

"We found out about something called gene editing, which could happen in the next few years, and that would mean they could go in and alter the genes of people affected to stop the disease from progressing. That's something we would like to see a lot more research into.

“Since I set up the Facebook group we have been in touch with families from Belgium, Australia, and the USA.”

To boost their efforts to contact families across the globe, Eileen and Sophia were recently visited by RareConnect, an online platform set up by the European Rare Disease Organisation to provide discussion groups for patients and families.

The youngster’s story has been featured on a video that has already been viewed hundreds of times on Youtube.

Sophia has been a pupil at Millwood since September, having spent two years in mainstream school. She has very poor eyesight, wears dual hearing aids, and is unlikely to grow above four feet in height.

Eileen added: “RareConnect came to see us a couple of months ago and they just put the video up recently.

“The more people we can reach, the better things will be. Hopefully the work we are doing with organisations like RareConnect can help us reach out to a global audience.”