My brother or sister has ataxia

Maybe you have more than one sibling with ataxia - you may not know anyone else in the same situation at the moment, but you are not the only one.

Ryan was awarded a Blue Peter Gold Badge on Christmas Day 2005 because of the help and support he gives his mum and twin brother Frankie, who has Friedreich’s ataxia. Ryan and Frankie met David Beckham and Johnny Wilkinson on the way.

www.sibs.org.uk is an organisation for people who grow up with a sibling (brother or sister) with special needs, disability or chronic illness. There is a special section for young siblings. Sibs also runs young siblings groups, to give children a chance to meet others in a similar situation.

You can chat online to other siblings at http://www.thearc.org/siblingsupport/sibkids-listserv

Meeting others

There are Sibling Support Groups in some areas, and also support groups for young carers, if you are doing most of the care for your brother or sister. Next time you see them, ask a doctor or social worker if there is a group near you. Or email helpline@ataxia.org.uk to see if we can put you in touch with someone like you (don’t forget to let us know where you live!).

Going to any new group for the first time can be daunting and take a lot of courage, but most young people find it hugely helpful to meet others like them to talk to, and have some fun with.

Books

£10.99 ed A Hames & M McCaffrey published Jessica Kingsley publishers www.jkp.com.

Siblings aged between 3 and 18 talk about growing up with a brother or sister with special needs, disability or serious illness.

There are no direct references to ataxia. But you will find many of the situations and feelings are ones you share, or understand very well.

If you would like to contribute your own story or suggestions, please email alex@ataxia.org.uk.

Helpline: 0845 644 0606

My brother or sister has ataxia

Meeting others

Books