FOR one much-loved young man life is far from easy, but he takes each day in his stride and with a smile on his face.
Chris Hibberd is one of only five children and adults in Queensland who have been diagnosed with Batten Disease; a rare genetic and degenerative neurological disease.
Mother Helen Hibberd said despite Chris now being blind and no longer able to walk the family never expected to have him until the age of 25.
"Those symptoms aside, Chris' true personality still shines through," Mrs Hibberd said.
"He has a very witty sense of humour and as a child he always loved an adventure and it is that personality that still shines through."
For more information on National Batten Disease Day today visit battens.org.au.
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