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My son, Alfie, was born 6 years into my role as an academic consultant neurologist with an interest in epilepsy. On his second day he was floppier than expected, and so was referred for a brain scan that revealed multiple malformations, the cause of which was never determined. He had his first seizure at 3 months of age, evolving into a clear developmental epileptic encephalopathy within weeks. By age 18 months he had specialist seating, PEG feeds, a tracheostomy, home oxygen and was ventilator-assisted. He was multisensory impaired, and had very little trunk or head control ever, though on a good day could kick and hit out at noisy toys with some purpose. He smiled, laughed, loved swimming, tasters and cuddles, and knew those most familiar to him (figure 1 and Figure 2). Alfie far outlived initial expectations, but died after a short illness in April 2016, leaving a legacy through organ donation, through the many lives he touched, and through all that I learnt from him (supplementary data).
If you have a chronic, life-threatening or life-limiting condition, particularly if it is unpredictable as with epilepsy, knowing there is an …
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