Introduction This is a society in which children are expected to live into adulthood. Not much is known about the long-term needs of children, who will not reach adulthood, but who may live with their conditions for many years.

Aims To hear directly from life limited children and their families about their day-to-day experiences.

Methods Case study provided the overarching strategy combined with participant observation, interviews and an invitation for young participants to use their own artwork and photographs to help them explain their day-to-day experiences. Eleven children, parents and siblings from ten families took part (39 participants).

Findings and discussion Children diagnosed early in babyhood seemed to have an identity within which the illness was integrated, perhaps because they were growing children hardly able to remember a time before their illness.

The children who took part were going to lead short lives. Families tried to shut away this fact to get on with daily life and live life to the full for and with the child.

Common elements (‘moments of realisation’) in the children’s life stories emerged:

• Questions of inheritance

• Diagnosis and prognosis

• Acute loss of abilities

• Slow deterioration

• Life threatening surgery

• The cycle of crisis and survival

• The child’s life and death.

These elements followed similar patterns across cases despite the range of diagnosis; they ebbed and flowed throughout the child’s life generating fear and uncertainty for the child and their family.

Care implications

Families lived day-to-day in a society that expects children to live into adulthood. Participants felt alone with the knowledge that their child would die young, aware of the wider social context Professionals should be aware that ‘moments of realisation’ in the child’s unfolding life might highlight times when pressure on family communication is heightened.