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Anyone A Parent To a Affected Child?

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  • January 21, 2011 at 7:54 pm #73457
    Anyone A Parent To a Affected Child?

    Hi I’m C and I found out I had myotonic dystrophy type 1 when I was 19. Im now 25 and when I was 21 I became pregnant the hospital offerd me a CVS test but it was 50% misscarage so I said no. Thay told me my baby will be born fine. May 2009 my daughter was born not breathing floppy and lifeless. Her legs where bent up to her head she was emergency c section. A week later she was tested for MD and she had congenetial myotonic dystrophy type 1. She is now 21 months old she can’t talk walk feed herself or sit up unatented she still on baby jar food as he swallowing was affected and for the first 5 months of her life feed by NG tube. I want to meet and talk to people with MD and also people with chrildren affected to. Love X little lady C X

    LittleladyC
    Participant
    Posts: 5
    Joined: 13/01/2011
    January 22, 2011 at 9:51 am #78728
    Re: Anyone A Parent To a Affected Child?

    Welcome LittleLady,

    I am not a parent but, I’ve spent enough time around my five nieces to know how much hard work being a young parent can be. Adding to that your baby’s diagnosis, it must be very hard sometimes. I hope it still seems worth it though & she brings you much joy.

    I am sure you will find somebody hear to talk to & the mods are often able to put you in touch with the right support groups. I think we’re all a pretty friendly bunch.

    Good luck ;)

    PS nothing wrong with a bit of NDUBZ eh :D

    I, Disabled Bloke
    Participant
    Posts: 540
    Joined: 29/10/2010
    January 22, 2011 at 11:07 am #78729
    Re: Anyone A Parent To a Affected Child?

    Hello LittleLady.

    I have 2 daughters aged 8 and 6 who are both Becker MD carriers but they don’t know it yet. I am planning on telling them when the youngest starts High School, that will see them 14 and 12 and hopefully that will be before they are sexually active. :shock: Alot will depend on what my ex tells them, she may break the news without my knowledge at any time.

    I appreciate that being Becker carriers is a far cry from your poor wee mite being personally affected at a very young age but i think we have a common ground, they stand a 50% chance of having affected sons, just like i am affected and my younger brother is thankfully not.

    My worry is only for their future, i have no expectation of being “cured” any more and can only hope that i don’t end up the grandparent of an effected male child.

    Give your wee lass a cuddle from me, and please get in touch if you feel it would be of benefit to you.

    Kind regards
    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
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