“The most surprising thing I have learnt about paediatric palliative care is that it is not just about endings. Palliative care is really a steady arm to lean on: it supports you to make your time together the best it can be, and it helps families take some control back over their lives.
When our son Joseph was diagnosed with a severe epileptic condition when he was only three months old, we had little idea of what the future would hold for him. We did know that our little boy was struggling every day with a condition that did not promise a long and healthy life. Despite this, Joe continued to meet every day with a smile and a genuine and infectious joy at being alive.
Story by Fiona Stewart
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