How is a life-limiting condition defined? How difficult is it to treat at home?
A life-limiting condition is any condition which has the possibility of premature death. There are four groups of children who, when diagnosed with their disease, would be considered to have a life-limiting disease or condition: • Children with diseases such as cancer for whom curative treatment is available but might fail. • Children with Cystic Fibrosis or HIV Infection for whom routine aggressive therapy may provide good quality of life but for whom a premature death is anticipated. • Children with progressive diseases such as neurodegenerative diseases for whom there is no cure, but who will live for prolonged periods of time. • Children with severe neurological disabilities or congenital anomalies that are neither progressive or immediately life threatening, but may lead to complications with a risk of premature death. One only needs to ask a parent caring for such a child how the illness affects their child, the other siblings, and themselves. The significant physical, emotional,