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Ten years ago, Sydney mum Megan Maack’s world fell apart after she was told both her young children, then aged two and four, had a rare terminal illness. A disease with no known cure that would progressively take away their words, mobility, learnt skills and ability to communicate and most likely end their lives as teenagers. She was told to ‘go home and love your children’. Sanfilippo syndrome is a type of childhood dementia causing fatal brain damage. One in 169 people carry the faulty gene that causes children to be born missing an enzyme that clears waste from their…