Children's book explaing ataxia

I have a 3yr old daughter and I'm struggling to explain my condition. I'm finding that I just brush over the fact that I'm clumsy or dribbling and make light of it.

My dad and brother both have ataxia and are suffering at different degres. My brother walks with a stick and my dad is currently in hospital.

She a very bright girl who loves books and I thought probably putting it in a story where she could identify certain symptoms with the characters might make it easier for her to understand.

I already have me, dad and my brothers characters but I was wondering if there was something other people would like to expain to a younger person about a symptom or progression. Any sugession would be appreciated.

Idealy I would like to self publish and use it as a fund raising tool for research.

8 Replies

  • Hi Eveie😊

    That's a nice idea😊 I hope you get lots of interest😊xB

  • Thanks Wobblebee x

  • Hi. Eveie78

    Very good idea and what a challenge for you to write a book! Perhaps someone will be able to help you from Ataxia UK. I personally wouldn't know where to start but perhaps you could write down your thoughts as they happen and then a book would form. Good luck. Ted

  • Thanks Ted. That's a good idea to see if Ataxia UK could help in some way I think I'll get in touch x

  • Brilliant idea. Not sure I have anything to contribute, apart from sending very best wishes. IF you need crowdfunding support I'd be happy to contribute.

  • Thanks so much x

  • Hi I think this is a great idea i myself have two children and know how very confusing it is to explain ataxia I think highlighting the fact that as well as ataxia being hereditry it can also be brought on by a number of other causes that are not hereditry.

  • I'm hoping to cover enough so that its relates to all people x

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