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Run your own race and find your cheerleaders along the way. That is the advice Melissa, mother of 18-year-old Lili, wants to share with the two million Australians impacted by rare diseases.

Lili was born with agenesis of the corpus callosum (ACC), a rare brain condition where the fibres that connect the left and right sides of the brain are missing. She was also born with microcephaly, meaning her head is smaller than average, global developmental delay, severe epilepsy and a respiratory condition that leaves her oxygen levels below 45 per cent every few minutes.

Back then, there was little information on the internet and no support groups for ACC in Australia, and Melissa was told that Lili would spend her life in a wheelchair with a feeding tube. Melissa said what she didn’t realise...