Toni x

Hi,

I was told a week ago that my 2yr old daughter has Cerebellar Atrophy, it's been really devastating, especially as I am finding it really hard to find much information in this condition. I not sure whether this means my daughter will never walk or talk or not. I am not sure I have even fully taken it all in all I do is cry most of the time.😢

Toni x

2 Replies

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  • Hi Toni

    Thank you for your post. I am so sorry you are going through this. I was diagnosed when I was 15 (nearly 25 years ago) and I remember how absolutely scary, devastating and overwhelming it was, particularly as my family, friends nor I had ever heard of ataxia. But there is support available...

    I would recommend joining Ataxia UK. You can either join online at ataxia.org.uk or phone/email the helpline 0845 644 0606/helpline@ataxia.org.uk. There are many benefits to joining the charity which is free and there is also a wealth of information on the website.

    Please read the 'Newly diagnosed' section on the website ataxia.org.uk/newly-dia...

    Also go to the following link ataxia.org.uk/Pages/New... and download the 2 publications 'Ataxia:What's that' and 'Ataxia:a parents' guide.' Hopefully these will be helpful to you.

    Finally there is a closed Facebook group for parents of children with ataxia to chat with others in a similar position. If you email communications@ataxia.org.uk they can arrange for you to be added.

    And of course, always feel free to post/ask questions on here.

    Best wishes

    Harriet

  • Maybe its not as bad as u think. I read somewhere that small kids can develop CA after a virus and the CA can go away. Good luck. N

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