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Mom of twins one with disabilities

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I have twin children. One of my twins a boy (we named him Daniel) was diagnosed with Spina Bifida and clubbed feet before birth. He uses a wheelchair for public outings and trips because he is unable to walk independently without assistance basically speaking. Both of them are 1 year old now. He also has braces for therapy and exercise around the house so that he can play unaided and stand up straight. Is there anyone who has a child with Spina Bifida as well? 

Comments

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    Hello @leahburnett1996 Pleased to meet you welcome.

    Thank you for sharing your story. Glad you joined

    Hope you find advice and information on our posts specific conditions.

    Please ask any of the community or team for advice

    Take care
    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
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    Hello Leah, @leahbuinett1996 and a warm welcome to the community. Good to have you with us.
    I have found surprisingly little in the way of recent conversations regarding Spina Bifida through a quick search of the site, but that may be the fault of the search engine or of myself :smile: so bear with us and, all being well, some more of our members will get back to you. There will certainly be members and staff here who can answer questions generally related to disability - about benefits, for example - so I hope you won't hesitate to ask.
    You might also like to contact the disability charity Shine, but, again, don't hesitate to ask any questions you might have.
    Here and listening,
    Richard
    @JennysDad

  • leahburnett1996
    leahburnett1996 Posts: 11 Connected
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    Thank you 

    I have looked at their website quickly. After taking a quick look I might join them as a publicist.  I couldn’t find anything in the way of conversations that might come in handy upon searching this website quickly to see if any of my questions can be answered. We have found a clinic for him but it’s not close so nope. I’ve found that online support groups for SB parents are generally the most helpful type of resource available out there. 
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
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    Hi Leah @leahburnett1996
    Could well be worth your while to stick with us. There are so many members here and such a variety of experience.
    Warmest best wishes to you,
    Richard
    @JennysDad

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