How do you describe ataxia to a child?

[HarryB]

[Hidden]

My granddaughter asked me why I can't stand or walk properly without falling over? I explained to her about how different parts of the brain operate different things in our body. I then told her that there was a small part of my brain that wasn't working and that this part was responsible for my balance.

She then asked me when it will be fixed? I'd to tell her that my 'balance box' (as I put it) had worn down a bit and can't be replaced. She's six years old and she seemed to understand.

[timk Volunteer]

I thought Iain's answers were very good. Until there are books for children explaining the condition, then we just try and use the language and concepts that are appropriate to the age and development of the child/ren we are communicating with. I used to teach 5 and 6 year olds. We had a child in the class who had diabetes and, among other things, had to eat regularly; the other children understood that because of his health, he was allowed to go to 'my' cupboard and eat biscuits throughout the day. I think children of a young age are able to understand 'difficult' concepts and we do them a service by doing our best in answering all their questions.

[Litty]

Iain, I thought your answer was excellent.

I had a similar problem when my children were very small, 5 and 3, and I got my genetic testing results and knew I had inherited the faulty gene. I was showing no signs, but my I was my Dad's carer, and he lived next door, and they saw a great deal of him everyday.

It was a really difficult time because I know that I could have passed it on to them. My doctor was brilliant. I did not want to tell them because as an adult it was devastating news, but she explained to me that it was much easier to grow up knowing you might have it than be suddenly told as an adult. It was really hard but I told them that I would be wobbly like their Grandad and that there was a chance they might be.

Now they are adults, they have told me that it was a much better way to deal with things. They are old enough to be tested now but both have decided that for now they do not want to know. They both know there is a 50% chance they may have ataxia but knowing you might and knowing you definitely have something is hard to get your head around and because SCA1 in our family does not start till your early 40s, there is no hurry. It was different for me because I had 2 small children and I did not want to have any more if I had it. But that was my choice.

Sorry, this is rather long winded!

Lit