Batten disease is a terminal neurodegenerative condition that affects children and young adults. It is a devastating diagnosis and families are grieving from that point. Families expressed a need for mental health services that understand how trauma and loss affects the whole family and can have a lifelong impact. Older siblings who have often been carers for their affected sibling from a young age, need specialist support to enable them to cope with life changes, such as college and university.

The BDFA commissions The Maypole Project, an organisation that specialises in supporting families who have children with complex needs and life limiting conditions, to deliver our family wellbeing service. Available to all families in our community, the support is tailored their support to the family’s specific needs, including one to one, couple, family, and children’s therapies and specialist sibling support. We need to maintain the service and expand it to include a group for older siblings.