TY - JOUR T1 - Learning from an exceptional boy JF - Practical Neurology JO - Pract Neurol DO - 10.1136/practneurol-2017-001853 SP - practneurol-2017-001853 AU - Hannah R Cock Y1 - 2018/02/01 UR - http://pn.bmj.com/content/early/2018/02/01/practneurol-2017-001853.abstract N2 - 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).Supplementary data[practneurol-2017-001853-SP1.mp4]Figure 1 Alfie and I enjoying tasters on my birthday in September 2015Figure 2 Alfie enjoying a visit to friends in August 2014.If you have a chronic, life-threatening or life-limiting condition, particularly if it is unpredictable as with epilepsy, knowing there is an … ER -