Ataxia with a baby

I have spinocerebellar ataxia type 2 (sca2) and I'm doing IVF with PGD testing to have a baby without the condition. 

Is there anyone here that has a baby but has ataxia? 

How do you go about with the baby if you're in a wheelchair? Also you can't really carry a baby around with balance issues. What happens when you go shopping? I know there are trolleys that clip onto a wheelchair but wheres the baby gonna go? Say you're already with someone that can push you, they won't wanna push you and a pram at the same time.

Thanks :)

6 Replies

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  • hello ... watch this ... she has two children, i think :)

    greetings

  • Hiya I have 2 children 3 and 1, I don't use a wheelchair at the moment so can't comment on that bit. I struggled carrying them around because of my balance but find it easier now they are both walking also can't go out on my own as can't chase after them.

    Don't be put off you deserve to have a normal life there is support out there for you.

  • Hello Caraxxo,

    I'm so very, very impressed that you're going the PGD route re: family planning...I'm from across the ocean (USA), but I just wanted to chime in and send heartfelt and warm wishes to your family for your willingness and courage to undergo this procedure!  If ever you'd like to swap notes with an SCA3 (or SCA2??) mother from the USA who recently and successfully had twin girls ~ 2 years ago, please let me know and I will contact her. 

  • It has been a long while since I had my babies but my Dad had ataxia and lived next door when they were small. Both my children loved to pop around and he always had tv shows they would love or sit on his lap to read books or play computer games. He was very careful picking them up and only did it sitting.

    As I have got more disabled I have stopped grocery shopping and have deliveries. I also do a lot of shopping online. As they get bigger they will enjoy shopping so get someone to help you. 

    You will get very tired so sleep when you can and accept the house will get a mess. 

    Good luck and have fun!   : )

  • So has your geneticist shared with you that you may have twins?!  Both success stories that I know of re: PGD and SCA resulted in twin girls.

    I take it that you are already in a wheelchair, correct?  What is your age, may I ask?  On a personal note, I had my son when I was 35 YO -- and it was a couple of years before I received a partial diagnosis (SCA, type unknown).  Fortunately, the symptoms I did have were not so pronounced re: walking and balance yet.  And so I was alright. 

    Litty gave some very good advice!  Good luck to you.

  • No I have my first appointment at the clinic next week. I'm 26 and not currently in a wheelchair but I'm curious Incase I do end up in one, as my mum was. Thanks for your reply x

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