This kind award will help towards the costs of our family support service for families affected by Batten disease. Batten disease is a rare neurodegenerative condition that affects children. It causes a progressive loss of all skills and the development of intractable epilepsy and childhood dementia. There are 13 types of Batten disease and it is a devastating and life-changing diagnosis. Sadly there is currently no cure for Batten disease and all those affected will usually die anywhere between young childhood to young adulthood, depending on the specific diagnosis.
The BDFA currently support 105 families with 111 children and young people with Batten disease (some families have more than one affected child). Our family support team provide our core support service, as they support families throughout the UK, providing direct practical and emotional support from the point of diagnosis, throughout their journey and post-bereavement. The support team visit families, attend meetings with families, run workshops for professionals and facilitate a community for families to connect to each other. The crucial provision of the built community within the BDFA helps families to share their experiences, also their feelings and as a result, they feel less isolated and alone.
