Nayte Scott is a patient little boy who loves playing with his Lego and watching movies at his home in central Queensland.

His mum, Skye, never imagined her six-year-old's lethargy and habit of walking on his tiptoes would be symptoms of a life-changing medical diagnosis.

"I just felt numb," Ms Scott said.

" I can remember the doctor saying that it's terrible to meet under these circumstances and just thinking, 'Oh, OK, this is huge.' "

Nayte was diagnosed with Duchenne muscular dystrophy in September, a genetic disease where the average life expectancy is about 30.

"We packed up and drove home from Brisbane and that's when I started reading all the statistics," Ms Scott said.

" I was in the car with my children, and I had to sob quietly and my poor partner … I couldn't say anythi

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