Lifestyle

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Medicine

Opinion

Katherine McDowell Mother and disability advocate September 29, 2025 — 7.30pm

In 2000, my late partner Shane received the diagnosis we had all been dreading. He had Huntington’s, a fatal neurodegenerative disease caused by a single genetic mutation. There is no cure. If one of your parents has it, there’s a 50 per cent chance that you will inherit the altered gene and eventually develop Huntington’s as well.

When we found out, our son, Harley, was just over a year old. I remember looking at him and thinking how much he was like his dad – two peas in a pod in their mannerisms and looks. It was eerie, almost uncanny.

The only thing I really grasped in that moment was this: if Harley was ever to face this disease, then the way I repres

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