Fredericks ataxia

Hi I'm new too all this. My 6 yr old daughter has been diagnosed just last Wednesday. I've been noticing clumsiness from about age of 1 1/2 yr old she was falling alot. Not walking very far as in pain.i have 3 other daughters ages 14-13- and 8. I've been reading they have a 1in 4 chance of having this terrible disease. I'm heartbroken its so cruel. I have not told my child she has this as she id at such tender age.. I have told my older 2 just a little bit about there younger sister. And how down the road she will need a wheelchair etc. I'm just looking for a bit of support as to get my head around this is so hard. Feel like I'm in a dream and its not real. I love my 4kids dearly. There my life like any mum out there. Also my husband can not accept it at all. His such a good dad. Any advice would be much appreciated 😊

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  • Hi kakyb - a nurse I saw said her best friends were in their 30's and lived full lives with fa :(. Don't give up :) Information is key - research yourself nuts. I wish I could take the pain away I can't. For me I needed counseling, maybe you could do that???? ♡♡♡

  • Hi kakyb

    Thank you for your post. I am so sorry you and your family are going through this.

    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-diagnosed

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

    Ataxia UK produce a Schools pack, and although aimed at younger readers, your daughter's teachers might find the information contained within it helpful. You can request this via the helpline.

    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

  • It is so sad to read your post. I have FA but it did not start in me until I was in my 40's which is very late. My parents found it hard to take on board even when I was so much older and married (now widowed) and not living with or near them. I have one sister who is older than me and she has no signs of it but didn't want to have blood tests to see if she had the gene for FA. You have lots to cope with and need to find support. I have found my own family pretty useless but luckily have a new man in my life who is great. He understands that I have bad days when I can't do too much. Do join any groups you can so you can speak with other people who are in the same position as you. If I can help you any way, please get in touch. My email is info@exmoorhideaway.co.uk

    Take care,

    Heatherxx

  • Oh no! That's awful to hear. Though my daughter has not been tested, the thought that she has s 50% chance of developing SCA3 is difficult enough, so I can imagine how difficult it is for you knowing your daughter had tested positive to an Ataxia. I am not sure I can really give any beneficial advice in relation to the condition but from one Mom to Mom, you are welcome to offload as I reckon similar thoughts have been going through our minds. All the very best to you and your daughter and the rest of the family. Stay strong. 😊

  • Hi, I also have 4 children and a 6 year old whom we are waiting for the reults of genetic testing to come back. After months of tests they have told us she definatly has some type of Ataxia and they think it could be friedreichs. The waiting is very painful!!! Just like you from 18 months we noticed how unsteady she was, for a long time she preffered to crawl. She gets so tired and I am always having to carry her.

    School are being excellent, it was actually the school who told me to take her to the doctors about a year ago. They help her get changed for PE and help her with her handwriting and fine motor skills thats without any diagnosis and extra support.

    If the diagnosis does come back as Friedreichs I wont mention the wheel chair either. I agree with you, it could be years before it progresses so badly and its best to be posistive so that she has the right attitiude to cope.

    I would appreciate any advice off you!!! :-)

  • Dear Kakyb, Although I have ataxia it's not FA, I'm much, much, much older (62 this month) and I had symtoms starting when I was 42. Although I can't offer much advice, I am a mom of two grown children and have three young grandchildren. So I know how much you want to protect your child from anything bad or painful! One thing I can say is you seem like a very loving mom and say your husband is a good dad! Just love your daughter (s) as much as you can. Also, someday I believe there will be a cure for FA, as there is so much research going on. That being said, your little daughter has your love and support and that's huge! I live in the US and you may want to go onto the National Ataxia Foundation (NAF) site here, as well as the Living With Ataxia site. Blessings to you and your family...,;o)

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