Grandparents
We understand how important extended family members are, Grandparents can be one of the most important support networks for parents of children with batten disease, providing emotional support and often taking on caring roles so that the parents can continue to go to work. The BDFA aims to provide support for Grandparents, who can contact the Family Support team for further information.
We see the value wider family and friends can also bring to the child and parents. They can also contact the Family support team for support and information.
You can contact the Family Support team via email support@bdfa-uk.org.uk or by phone.
Sibling Support
Having a brother or sister with a disability can be very hard. You may feel very sad that your brother or sister is very ill, and you may be worried about their illness or things you don't quite understand. You may find it hard at school as your friends might not have the same problems as you and you may feel like you don't have anyone to talk to.
It is important that you have people to talk to and a good place to start would be by talking to your mum, dad, grandparent, or someone you are close to. At school it might be helpful to talk to a teacher and explain what is going on at home to them. They can support you when things get hard at home which can affect how you are in school and be more understanding if you haven't had time to do all your homework.
It is also good for you to have some time to yourself and to spend some time doing things you enjoy doing. This might mean joining a sport or leisure club or asking your parents to spend some time doing something with you at least once a week. If you are old enough to go out with your friends, this will give you some time to enjoy the things you want to do. You don't have to feel guilty about enjoying yourself.
You may want to spend lots of time with your brother or sister if they are very poorly and you may want to help your parents to care for them. You may be able to join your local young carers club to meet other children in the same situations as you.
Having special times with your family and brother or sister and making memories helps. Just because they have a disability doesn't mean they can't or don't want to play with you. Here are some ideas for things that you can enjoy together:
- Take lots of pictures and videos of the fun games you play
- Write a diary so you can remember what you did with you brother or sister each day
- Make a scrap book of pictures of special places you went to with your sibling
- Make a memory box, use pictures or objects and put these in a box. You can then look at the objects and remember all the fun things you did with your brother or sister. You can also put some of their favourite things into your memory box.
- Draw pictures of you and your brother or sister
- Read books and watch films together
- Listen to your favourite music together
Family Well-being support Service
The BDFA provides specialist therapeutic support to all family members through our family wellbeing service. You can find out more information and how to access the service on the Family Wellbeing page here.
If you want some more information here are some other organisations:
SIBS exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.
Carers Trust supports all carers including Young Carers - This charity help and support those children who are young carers and care for someone who is poorly. On their website you should be able to find information about local young carers groups which you might be able to attend.
Swings and Smiles offer support via email if you are over the age of 12 and have your parent's permission. If you live in West Berkshire you can also visit them at their offices and you can take your brother or sister along too. They have plenty of fun things which you can enjoy together.
The Rainbow Trust supports the whole family, they can provide family support workers to help with days out and lots of other things, visit their FAQ's page to find out more
KIDS are a national charity who support children with disabilities and their families. They can provide respite care for your brother or sister to give your family a short break. See their website for more details.
Kinship is the leading kinship care charity in England and Wales. We're here for all kinship carers - the grandparents and siblings, the aunts, uncles, and family friends who step up to raise children when their parents can't.
Family Lives was formed over forty years ago by volunteers, with the aim of ensuring that all parents had somewhere to turn before they reached crisis point. Family Lives know that the right support at the right time makes all the difference.
Family Lives provide targeted early intervention and crisis support to families who are struggling. The issues they support families with include family breakdown, challenging relationships and behaviour, debt, and emotional and mental wellbeing.