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.
