Tuesday, October 6, 2009
chromosome 19
I hope that this blog might be of help to anyone who has a family member with a deletion in any part of Chromosome 19. Our sons specific deletion is with 19p13.2 but I'm sure there can be so many different things going on with this that no two people will have the same things wrong. Deletions within chromosome 19 are very rare, as I'm sure you have had a very hard time finding anything on it at all. I have searched the Internet and have found very few things myself. There are a few sites and organizations that deal with rare chromosome disorders but I have yet to find any that just deal with number 19. I am still searching, it is a never ending search to find anything that will help our son. My hope is that this deletion, that to our knowledge still has no name, will become known and researched for all of our children's sake. The more we know the more we can help our children.
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My daughter has this same deletion. Please contact me via email at jasonandkristylee@hotmail.com I would love to exchange info as my baby girlis only 8 months old
ReplyDeleteI would love to chat with both of you. Our little bean turns one this Sat. We received the results of our genetic testing in Dec; she has a deletion on 19 p13.3. Not exactly the same as your little ones, but close. It's so hard to find info on this. If you have time to chat at all, I'd love to hear how your little ones are doing now?
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