Overview

In this book, we cover the family experience of caring for a chronically ill child with Schinzel-Giedion syndrome (SSG), a very rare, congenital and neurodegenerative disease. This is a comprehensive study carried out with the family of Bruno and Jéssica, the parents of baby Ricardo. Aware of the short life expectancy imposed by SSG, the family takes advantage of and maximises their son's time to live, both in the sense of extending it as much as possible and offering the best care 'of, in and for' life. We have grasped a notion of care that encompasses and integrates the needs of the beginning of human life, flowing and spreading through care during illness. We invite the reader to think of time as a confluence in which the past and future overlap the present, which is an inexhaustible source of the lived, through which life gushes incessantly. Health services and professionals need to rethink the protocol and rigidly formalised times that, as a rule, guide their actions and the organisation of care processes, in an effort to embrace the temporality of living and caring for children with other normalities.

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