General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  

Thinking about the end of your child or young person’s life is an extremely difficult and emotional time, not only just for you but also for the rest of your family. It is very sadly something which families of children and young people with a diagnosis of an NCL will have to face.  Some people like to plan well in advance to enable them to spend invaluable family time together. Planning ahead enables you to look at all the support available for you and you whole family when you need it most.

Getting in touch with your local hospice can be a good start when thinking about types of support available for, not just your child or young person but the whole family. Getting in touch early will enable them to build a relationship with you and your child or young person as their needs increase.

Together for Short Lives is a charity that supports children and young people living with life limiting illnesses in the UK. They can provide you with information on end of life care as well as giving you and your family lots of other information about what support you can receive and information about hospices. Visit their website: http://www.togetherforshortlives.org.uk/

Below is a list of all Children’s Hospices in the UK:

To view Adult Hospices please visit: http://www.hospiceuk.org/

Visit Website

For more information about your local hospice or for any other hospice support please visit the Together for Short Lives Website.

Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

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