49,000 children and young people are living in the UK with health conditions that are life-shortening or life-threatening—and the number is rising. That’s one in every 270 children—the equivalent of one in every school.


When Donna and Steve first found out that their baby son Harry had Mitochondrial Disease they felt cut adrift from their old life and part of a minority that is rarely seen or understood.

They said: “We battled for four years with no support and trying to do everything ourselves. It was just our little family trying to cope with the help of various health professionals. We’re glad we found out about our local children’s hospice when we did.”

To help explain the impact on families we have produced a series of infographics:

Why We Are Here P1Why We Are Here P2Why We Are Here 3Why We Are Here P4