The obituary of the Liberal politician Michael Meadowcroft – my father – noted the premature death of my daughter Esther in 2022. She lived with complex and multiple learning difficulties and intractable epilepsy. While there were seizure-free periods, much of her life was stolen by the rare disease GAMT.
Sadly this was not diagnosed until she was 30. She died a fortnight later; our persistent requests to start treatment during this time proved fruitless.
Society struggled to include Esther. She was loud in quiet places and would rarely sit down, even when everyone else around her did. Nonetheless, she brought out the best in people.
Consistent with his values of liberty, equality and community, Michael observed after her death that “not all individuals conform to some universal template … human society has to accept every Esther as a full member of it”.
