Caring for a seriously ill child with complex medical needs and disabilities can be financially and practically challenging. The BDFA is here to support you by providing guidance on benefits, grants, and financial assistance. We can also connect families with other organisations that offer additional support for daily challenges. Below, you'll find information on financial aid, grants, and special gifts for siblings.
This initiative allows families, friends and anyone, who knows a Batten sibling, to nominate them for a surprise delivery in the post. This can be as a reward, as recognition, as a support package when things are tough, or for any reason the nominator feels appropriate. This initiative is, of course, for our whole batten community and as we are very aware, our bereaved siblings will always be affected by batten disease and we want them to be wrapped in our love and support too.
Siblings can be nominated more than once over time too, we know this journey is a rollercoaster and we want to be there all the way for our siblings.
This initiative will be funded by our Pedal4Memories Fundraising Project and so things will change slightly with how we share all money made. 50% will continue to support the boys memory making fund and future proofing and 50% will be shared between the fabulous work at the BDFA and supporting Arthur’s Gift.
We will also have an Amazon wish list that anyone can access and purchase a gift to go into our Arthur’s Gift stock room ready for packaging up into a surprise delivery.
Arthur is very excited and extremely proud to be a big part of this new chapter of our journey and will be involved in choosing gifts, wrapping parcels and sending these to his fellow siblings.
Batten Fighters Forever is a Charitable Incorporated Organisation (CIO) focussed on increasing awareness and raising funds to support the treatment and care of people with Batten Disease and to assist the families of children with Batten Disease.
The objects of the charity are:
-
Providing information about Batten Disease and where practical help and support can be found;
-
Raising public awareness about Batten Disease and how research into the disease and support for people with the disease, their families and carers will improve the conditions of life for people with Batten Disease;
-
Making grants to:
-
pay for personal care, equipment and home adaptations for people with Batten Disease;
-
assist in the provision of practical help, advice, support and respite care for people with Batten Disease, their families and carers;
-
fund research into Batten Disease and the treatment of the disease, provided the useful results of such research are published.
-
