Batten disease is a group of genetic disorders that cause waste material to build up in brain cells, leading to cell death & causing loss of speech, mobility, vision, cognition & childhood dementia. Most children diagnosed with Batten will die in childhood. While palliative care is embedded & ongoing, structured bereavement support is limited. After their loved one dies families can feel isolated & unsupported, with few services that understand the unique, lifelong & complex Batten journey.

As the sole UK organisation specialising in support for Batten disease, the BDFA provides holistic support from diagnosis to end of life. In consultation with bereaved parents, we are in the process of developing a dedicated bereavement support programme, including peer networks, reflection groups, memory-sharing & gatherings – offering ongoing emotional support, advocacy & connection to ensure families are supported long after their child’s death, by people who truly understand their journey.