A sibling, or child of an individual with ataxia can easily fall into the role of carer. Knowing and caring for someone with ataxia allows children to develop key skills such as loyalty, understanding and patience, all of which are valuable throughout life. On the other hand, it is important to be aware of how a sibling or child can be affected, how they are feeling and offer help and advice on ways to cope. It may be the case of simply being there to listen when they need someone to talk to.

Every child and family is different. Here are a few general pieces of advice offered by parents:

  • Give information about the child’s condition to the sibling
  • Don’t be negative - your children can learn from the experience
  • Support groups can help
  • Give information to your child’s school
  • Link up with other families who might be facing similar challenges
  • Use generic help like children’s centres
  • Allow children to speak their mind even if it’s difficult
  • Don’t put pressure on them – try not to have too high of an expectation of your non-disabled child

Genetic Alliance UK's leaflet explaining genetic conditions specifically for siblings, titled 'Genetics: What's it got to do with me?' is a good starting point to help your child understand how the disease affects them and could also help them come to terms with being a carer.

Contact a Family is a charity for families with disabled children and has an excellent selection of resources on its website www.cafamily.org.uk (Helpline 0808 808 3555).

Carers Trust runs a dedicated website for siblings/young carers www.youngcarers.net (0844 800 4361).

Sibs (www.youngsibs.org.uk or 01535 645 453) is a group working to help siblings of those with additional needs.

CarersNet (www.carers.net.org) is a website for the Coalition of Carers in Scotland. It has information on young carers’ projects in Scotland.

Sibling Support Project (www.siblingsupport.org) is an American-based siblings information website. The resources are applicable to the UK.

There are also a number of books available specifically for siblings, parents and professionals. Check online or with your local bookshop.