WATCH: Meet the little girl that’s beating all the odds

Between her blond locks and wide eyes little Evelyn Murray’s smile can light up a room.

But looking at her you’d never know there was anything different about her.

She’s one of just five people in Australia with an extremely rare genetic disorder, only discovered in 2011 - a mutation of the STX-BP1 Gene, which normally helps the neurons in the brain talk to each other.

But despite her parents Shane and Melissa initially being told by doctors that she may never walk or talk, Evelyn continues to surprise them.

“Evelyn continues to defy the odds despite the fact that her challenges are ever present and she is such a cheerful little girl,” her dad Shane tells Be.

After a textbook pregnancy, Evelyn was eight weeks old when she started having unexplained seizures every day.

When she was nine months old they suddenly stopped and her parents were counting their lucky stars. But it became obvious that she wasn’t meeting the usual milestones.

It was a difficult time for the Brisbane parents who just wanted to know what the cause was.

“We were originally told her diagnosis was for the GLUT-1 transporter deficiency syndrome and were told that the chance of Evelyn walking or talking was extremely slim,” Shane remembers.

However that diagnosis soon proved wrong and Evelyn’s bloods were sent to a research facility to finally get an answer.

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It took 18 months for Shane and Melissa to get the results and the correct diagnosis, but they used that time to throw everything into Evelyn’s development, finding her all kinds of therapists, nutritionists, chiropractors, and a genetic paediatrician.

Miraculously she learned how to crawl by the age of one and began walking a year later, things her doctors never thought would be possible.

“Evelyn’s first steps were such a huge breakthrough for us. Truly one of the proudest moments and one of the biggest milestones Evelyn has achieved,” Shane tells us.

“As heartbreaking as it is, we celebrate the milestones as they happen and continue to ensure she is continually moving forward.”

And the achievements just keep coming with Evelyn learning how to ride her cappy coaster – just like any other five-year-old.

“Evelyn’s mobility has always had some balance issues so one year we bought her four different types of bikes and ride-ons for Christmas, just to see if we could make any headway,” her dad says.

“We would push her away backwards and she figured out how to push back towards us. It was definitely a proud parent moment.”

Since then little brother Edward, now 11 months, has joined the family helping the parents realise how far Evelyn has come.

But the fact she is nonverbal and has a limited general understanding of what people say to her, has brought its own struggles.

“Unfortunately areas like speech and communication, toilet training and social behaviour are the slowest to get results,” Shane says.

“But she is so brave, strong and persistent and has been through more challenges than most people have in their adult lives.”

With less than 300 reported cases of the disorder worldwide, Shane and Melissa are hoping to travel to America to meet other families in the same situation.

“The idea is to meet up, share stories, advice, experiences and then take all the kids to Disneyland,” says Shane, who has started a GoFundme account.

For now Shane and Melissa want to make the most of their time with Evelyn while she remains seizure-free as there is a chance they could return.

“The big thing for us is for her to be happy and healthy,” he says.

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