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

3 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

  • As cerebellar atrophy can have many causes, it might be helpful to schedule a talk with your child's consultant or GP. If this is an inherited condition, you might also want to see whether you, your partner or both have the defective gene in relation to having further children.

    Hope you get all the answers you need to help your family.

  • 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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