Here's a list of articles on life limiting illness you might find helpful
More children now living with 'life limiting' conditions
The number of children with conditions such as muscular dystrophy, neurodegenerative disorders or severe cerebral palsy who are surviving into adulthood has been underestimated, a new study shows.
How schools support children with life-limiting illnesses
One child in every 270 has a condition that is life-threatening or life-limiting.Louise Tickle explores how schools help them stay in mainstream education
Comparing Three Life-Limiting Diseases: Does Diagnosis Matter or Is Sick, Sick?
The results of this very well done and far-sighted study seem to support the contention postulated in the title -- that being sick, regardless of diagnosis, is what matters.