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1. A child develops a life-limiting or life-threatening condition ...
... and the family story is permanently changed
2. The child does not wish to be defined by their condition despite the impact it has on their life.
The child and their family must quickly adapt. They meet a lot of people and begin a lifelong process of learning.
My parents will decide.I want to see my friends
We have so much to think about and sort out
There will be one treatment, followed by another and another
I need to call work
3. The child's condition and care become a family vocation.
We must collect that medication
4. Fluctuations in the child's condition shape family expectations
5. Key personal relationships are developed with clinicians who "look after" the family
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