Bringing families affected by Batten Disease together
Batten Disease is the common name for a group of genetic life-limiting neuro-degenerative conditions. It is a rare condition, with around 200 children and young people in the UK. There are a handful of new diagnoses every year.
Children born with the illness are seemingly healthy, until they begin to develop epilepsy, lose their sight, speech, and their cognitive and motor abilities. Batten Disease is fatal, children will die between the ages of five and thirty.
Many families describe the feeling of their child 'being written off' following their diagnosis. The news of diagnosis has a devastating effect across the whole family. In particular, siblings deal with numerous and traumatic issues - guilt, anxiety, grief, depression and feelings of neglect. In the long term, parents and siblings need to somehow prepare for the death of their brother or sister.
It is rare for families to be able to access training, healthcare professional advice and the chance to meet other families affected by Batten Disease. For many families, a residential weekend can be life-changing.
This is why Roald Dahl's Marvellous Children's Charity is working in partnership with the Batten Disease Family Association to run two family residential support weekends.
The residential weekends (to be held in Scotland and West of England) will:
Over the weekends, there will also be workshops for parents which will give the chance to discuss bereavement and explore the needs of siblings. The weekend will include tailored support for each member of the family.
Each weekend will host between 10-15 families from around the UK (between 40-60 people). The weekends will also be attended healthcare professionals working across health, social care, and education.