Parents, carers and disabled parents
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Hi, my name is becci1005!

Hello there, I am 22 years old and have Central Core Myopathy, Scoliosis repair, Bi Lateral Femoral Shortening and Complex PTSD. I have 2 children 1 of whom recently underwent her surgery for bi-lateral hip dysplasia and is in her spica, which they believe may be linked to my genetic condition. Im just wondering if others out their have had children with the same or similar problems to then due to genetics and the subsequent emotions that come with it all... I feel very alone, I dont have many friends and certainly none who understand. Thank you.

Replies

  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hello @becci1005 - I'm pleased to be the first to welcome you to this lovely community, & thank you for joining. I do have some understanding as I have a different genetic disorder called Ehlers-Danlos Syndrome (hypermobile type), which I've passed on to all of my children & all 3 of my grandchildren.
    I've felt guilty about it before, which I think other parents may have felt, but which doesn't do you any good; after all you inherited it from a parent, who may not have even known about it, & you probably wouldn't ever think to blame them.
    My son was born with bilateral talipes equino-varus (both feet turned inwards), & had to have corrective surgery when he was 14 months old. He then had to have toe to groin plasters on both legs; not as bad as a spica, but bad enough. He was the only one of my children that decided to crawl, & one day got stuck under a dining chair (the sort that has struts at either side & another piece at right angles to these across the middle, close to the floor).....took me about 10 minutes to get him out! Of course he remembers nothing about the time he was in plaster (not even the dining chair incident!), & neither will your daughter.
    Please do chat here any time.



  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @becci1005

    Good Morning & Welcome 😃😃

    I am one of the Community Champion’s here at Scope.

    We have got some info for you below:

    https://community.scope.org.uk/discussion/41646/hi-my-name-is-diane-bostock

    Please please let me know if there’s anything else that I can help/support you with?? 

    @steve51
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hi @becci1005 and a warm welcome to the community.
    My eldest daughter (now 12!) had a spica when she was a baby. It's really difficult to see your child in plaster and worry about their future so I can definitely relate to that. How long has your daughter been in her spica and how old is she?
    Senior Community Partner
    Scope

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @becci1005, I hope you can find others on here who you can relate to. Please do let us know how you and your daughter get on. :)
    Community Partner
    Scope

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