A diagnosis of Batten disease, a terminal childhood condition has a devastating impact on the whole family. Our peer befriending service offers emotional support to families from those who understand the journey best, other parents, who walk alongside them, building resilience and reducing isolation
Batten disease is a terminal neurodegenerative condition affecting children and young people. Facing the extraordinary experience of a terminal diagnosis, and the anticipatory grief and trauma that goes with it, is complex and only truly understood by parents in the same position. Parents told us that they want to see that there is hope in the midst of a Batten diagnosis. They want to be connected with someone who has ‘walked in their shoes' and learn from their knowledge and experience.
We have established a Peer Befriending service, which works in synergy with our core family support and is increasing our capacity to offer emotional support and to “walk alongside” families, building their resilience and reducing isolation. The project is led by a Coordinator, a bereaved parent appointed from within the community. As such, this is a community led and community driven project. We have a team of eight fully trained peer befrienders who are now regularly supporting other parents.