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Found a mom who had a DS with the same syndrome as my DD

amajaneamajane member
in Special Needs
I was googling Marley's syndrome- DOOR, last night and I came across a website dedicated to a little baby who died from the same syndrome 3 weeks after he was born. The reason this is a miracle is that there are literally only 35 cases diagnosed worldwide of DOOR syndrome. It's the rarest of the rare. Anyway, I sent an email to the mom and I really hope she emails me back! It's been such a lonely experience having a baby with such a rare syndrome. Yay the internet!
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Re: Found a mom who had a DS with the same syndrome as my DD

  • hannah&benhannah&ben
    Wow - that is amazing! I hope she does email you back!
    I have found great comfort in connecting with other moms of babies with issues similar to Jack's - its so great to be able to talk to someone who "really gets it"! Hope you hear from her soon!

    Hannah

    ps - Love the new siggy pic- what a cutie!!!! Love her onesie too - did your DH make it? Too cute!
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  • GraceCGraceC
    Wow, I hope she responds soon.  Sorry to hear that she lost her son, so sad. 


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  • Alicia13Alicia13
    I am so glad you found her!  I hope she replies soon!
    By the way, Marley is adorable in your new siggy picture!
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  • pumpkinbugpumpkinbug

    I too hope she emails you back. Cash has a rare syndrome too, there are only 300 reported cases world wide. Luckily we have a network that has been formed from the parentd of the older children. I would have been lost in the early days without it!

    Good Luck

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