There are few things more tragic than the sudden death of a child, an event that can leave parents bereft, heartbroken and railing at the unnatural order of things.
Ellen Bletsoe explains more in this piece from Lucy Banwell and the Telegraph Online.
With your support we can help support families living with the devastating diagnosis of Batten disease
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease