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Grandparents can be one of the most important support networks for parents of children with disabilities. They provide emotional support to their sons or daughters and can often ake on caring roles so that their son or daughter can continue to go to work. Grandparents may even support their son and daughter financially if they feel they cannot work and care for their child. Some Grandparents are the sole carers for their grandchild. The BDFA aims to support Grandparents in whatever way possible. You can ring the helpline or send us an email for support or to find information on all the forms of the NCLs.

There are also a few other websites which we have found that may provide you with helpful information.

Although we have attempted to select only reputable organisations, the BDFA is not able to specifically endorse or vouch for any of those listed. Therefore we advise that you remain cautious in your dealings with anyone until feeling confident you have established their legitimacy.

Our Path through Batten disease (The middle years)

The road is very rocky, our pathway very steep, the ups and downs of this disease will often make us weep.

But we keep on going, there is no time to rest. Awareness and a cure has now become our quest.

We have had to be accepting that the hopes and dreams we had will all be very different now, but we try not to be sad.

We’ll just celebrate life differently, adapt our dreams and hopes. Living each day one by one – this is how we’ll cope.

It’s now about the little things – comfort, love and peace. Doing what we think is best to combat this disease.

It’s not an easy journey with all its ups and downs. Batten disease is always there trying to break our hearts or break us down.

Sometimes we think it’s just too hard to survive another day, but then a ray of sunshine breaks through to help us on our way.

A smile, a twinkle in his eyes, a reminder why we are here – the unconditional love for him which we will always hold so dear.

Debbie Norris

Grandparents Plus is a national charity offering support to grandparents. They can give you advice and support about your caring roles as well as advice on fun things to do with your grandchildren. They will also give you support about how you can support your children when they are caring for their child with a disability.

Helpline: 0300 123 7015

The Grandparents Association is a national charity that supports Grandparents and their families. They can provide you with information on benefits, childcare and the law. They also run support groups for Grandparents. To find out where your nearest group is please visit their website:

There may be Grandparents who are the sole carers for the grandchild with a disability. The Grandparents Legal Centre’s Community Care Team at Elderflower can advise you on about your rights and the responsibilities of the local authority and NHS services. They aim to support all Grandparents in their caring roles:

A Child of Mine recognises that the relationship between a Grandparent and their grandchildren is special. They can offer support to you after your grandchild has passed away.

Child Bereavement UK has written an information sheet for Grandparents explaining about the grief you may feel after your grandchild has passed away. They also have a helpline which you can call if you need bereavement support.

Helpline: 0800 02 888 40

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