Site Map


This links to all the information and pages we have collected on this blog. 

T18 Research 
Research papers specifically about Trisomy 18

T18 other info  
Other info on T18

Non T18 info 
 Information that is useful but not specifically about T18
  1.  Congenital Diaphragmatic Hernia/Diaphragmatic Eventration 
  2. Tracheostomy

Personal Pages
 Links to the pages/blogs/articles of families of children with T18 (and some T13)
  
Rumer's Story and Documents

2 comments :

  1. I'm really sorry to hear of the loss of your little girl- and such a lovely name you chose. This site is a beautiful testament to her.

    As a carrier of a reciprocal translocation that causes partial T18 I have found your story both heart wrenching and incredibly interesting. My partner and I are planning to start a family in the next couple of years and, although we are going into it with the knowledge of the T18 risk, I am concerned about how things would proceed should we conceive a baby with the condition.

    I completely empathise with your want/need to do as much research as possible into the subject- having studied Genetics I had a bit of a head start understanding my translocation but I have also been doing some research sporadically for years. It's terrible that your hard work and research into providing the life for your baby was dismissed on so many occasions.

    I will look forward to reading the rest of Rumer's story and wish you and your husband well for your future.

    ReplyDelete
    Replies
    1. Thank you for your kind words!

      I don't know whether you've come across any of the trisomy groups? There's a UK group on Facebook which has a number of people with surviving children (as well as a few whose children have died) that you might find useful. Sadly it really isn't an easy path, but it's good to be thinking about how you'd want to handle things as early as possible (as you are).

      Do let us know if there's any way we can be of help.

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