Georgia is just one of 200 in world with rare gene condition

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The mum of a girl with an ultra-rare genetic disorder will lead the first UK charity to help families of children with the condition.

Georgia Smith, 15, is one of only around 200 people worldwide to be diagnosed with Wiedemann-Steiner syndrome (WSS).

After years of medical tests Georgia, of Sharlston, was only diagnosed this year with the condition, which affects growth, muscle tone and childhood development and leads to unusual facial features.

In August her mum Alison Smith set up the first UK meet-up for people affected by WSS.

The event at Twycross Zoo in Leicestershire was attended by around 70, along with WSS expert Dr Wendy Jones.

Miss Smith said: “Two families came from Europe, from Germany and Norway.

“It was just absolutely amazing.

“I was really proud. It was an emotional event because it felt like we were doing something for Georgia, and because the children just got on with each other.”

The new charity, yet to be named, will help families of youngsters with WSS and raise awareness of the condition.

Miss Smith described finding out that Georgia, who also has autism and dyspraxia, had WSS after waiting years to get to the bottom of her health problems.

She said: “It was upsetting but a relief because it had taken 15 years to find out.

“That’s why I couldn’t sit back and do nothing and decided to reach out to other families.”

Research is being carried out into WSS, which is caused by a spontaneous genetic mutation.

Miss Smith said the long-term outlook for Georgia, who goes to St Thomas-a-Becket Catholic College, was not clear because so few adults were known to be living with WSS.

She said: “There is only one adult with WSS in the UK and two in America. We don’t know what the outlook is.

“I know I’m going to be Georgia’s carer for ever. You just take each day as it comes.

“There may be other families of children with WSS who just don’t know.”